Technology and Handicapped People

May 1982

NTIS order #PB83-172056
Library of Congress Catalog Card Number 82-600546

For sale by the Superintendent of Documents,

U.S. Government Printing Office, Washington, D. C. 20402
Foreword

Technology exerts a powerful influence over the lives of everyone, making life easier,

more fulfilling, but sometimes more painful and frustrating. This statement is especially true for people with disabilities. The appropriate application of technologies to diminishing the limitations and extending the capabilities of disabled and handicapped

persons is one of the prime social and economic goals of public policy.

The Federal Government is deeply involved in programs that affect the development and use of technologies for disabilities. programs cover research and development,

marketing, provision and financing of technologies, civil rights and their enforcement,

employment, transportation, health care, income maintenance, and independent living, to name only a few categories.

Congress and other institutions have become increasingly interested in questions

of how well programs that directly or indirectly develop technologies and support their

use have been performing. Concerns have been raised about consistency of objectives,

conflicting incentives, and lack of appropriate distribution of technologies.

The Senate Committee on Labor and Human Resources requested the Office of

Technology Assessment (OTA) to conduct a study of technologies for handicapped individuals. OTA and the requesting Committee both recognized the extremely broad

and complex range of issues that could be addressed in such a study. Therefore, OTA

conducted a planning study. Using the results of that study, OTA prepared a proposal for a full assessment on technology and handicapped people, which was approved

by the Technology Assessment Board in September 1980.

The study examined the specific factors that affect the research and development,

evaluation, diffusion and marketing, delivery, use, and financing of technologies directly

related to disabled people. The problems and processes of the development and use of

technologies were analyzed in the context of societal allocation of resources and the

setting of goals for public policy. The study concentrated on two critical matching processes: between technological needs and technological capabilities; and between allocation goals or intentions and resource capabilities.

As is the case for all OTA assessments, this study was guided by an advisory panel,

chaired by Dr. Daisy Tagliacozzo. In addition, a large number of other consultants,

contractors, and reviewers contributed significantly. We are grateful for their many contributions. As with all OTA reports, however, the content is the responsibility of the

Office and does not constitute consensus or endorsement by the advisory panel or by

the Technology Assessment Board.

JOHN H. GIBBONS

Director

///
Advisory Panel on Technology and Handicapped People

Daisy Tagliacozzo, Panel Chair

Department of Sociology, University of Massachusetts,

Miriam K. Bazelon

Washington, D.C.

Tom Beauchamp

Kennedy Institute—Center for Bioethics

Georgetown University

Monroe Berkowitz

Bureau of Economic Research

Rutgers University

Henrik Blum

University of California, Berkeley

Frank Bowe

Woodmere, N. Y.

Jim Gallagher

Martha Porter Graham Cente r

University of North Carolina, Chapel Hill

Melvin Glasser

Committee for National Health Insurance

Ralf Hotchkiss

Oakland, Calif.

John Kimberly

Yale School of Organization and Management

Yale University

Robert Leopold

Department of

Hospital of the

LeRoy Levitt

Harbor Campus

Psychiatry

University of Pennsylvania

Mount Sinai Hospital

A. Malachi Mixon, III

lnvacare Corp.

Jacquelin Perry

Rancho Los Amigos Hospital

Barbara W. Sklar

Mount Zion Hospital

William Stason

Veterans Administration and

Harvard School of Public Health

Gregg Vanderheiden

Trace Research and Development Center

University of Wisconsin

Michael Zullo

Corporate Partnership Program

U.S. Council for International Year of

Disabled Persons

iv
OTA Project Staff—Technology and Handicapped People

Joyce C, Lashof* and H. David Banta, ** AssistarIt Director-,

Health and Life Sciences Division, OTA

H. David Banta* and Clyde J. Behney, ** Health Program MarzagerClyde J. Behney, Project Director

Anne Kesselman Burns, Analyst

Chester Strobe], Analyst

Arthur F. Kohrman, Congressional Fellow

Judith E. Randal, Congressional Fellow

Kerry Britten Kemp, Editor

Virginia Cwalina, Administrative Assistant

Nancy L. Kenney, Secretary

Lorraine Gerbil Ferris, Secretary††

Michael P. Hughes, Secretary

Mary E. Harvey, Secretary

Special Consultants

Stephen Chitwood, George Washington University

Marvin Kornbluh, Congressional Research Service

Mark Ozer, George Washington University School of Medicine

Principal Contractors

Richard Beinecke, Institute for New Challenges

Nancy Carlson, Michigan State University

Candis Cousins, Wright Institute

Leonard Duhl, University of California, Berkeley

Kent Hull, Michigan State University

Tom Joe, National Opinion Research Center, University of Chicago

Sharon Lansing, Management Instruction Resources

Martha Ross Reddan, American Association for the Advancement of Science

Jeffrey Rubin, Rutgers University

Sally Shannon, Washington News Associates

Ellen Smith, Georgetown University

Virginia Stern, American Association for the Advancement of Science

Kenneth Warner, University of Michigan

OTA Publishing Staff

John C. Holmes, Publishing Officer

John Bergling Kathie S. Boss Debra M. Datcher Joe Henson

‘Llntll Dwember IQ81
Contents

Chapter Page

l. Introduction and Summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3

Part One: Impairments, Disabilities, and Handicaps

2. Definitions and Demographics . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 19

3. Assessing Disabilities and Planning Services. . . . . . . . . . . . . . . . . . . . . . . . . . . . 27

4. Conclusions From Part One . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 43

Part Two: Technology

5. Technology and Its Appropriate Application . . . . . . . . . . . . . . . . . . . . . . . . . . . 51

6. Research and Development . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 59

7. Evaluation of Technologies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 75

8. Diffusion and Marketing of Technologies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 87

9. Delivery, Use, and Financing of Technologies. . . . . . . . . . . . . . . . . . . . . . . . . . 101

10. Developing and Using Technologies: Conclusions From Part Two . . . . . . . . 129

Part Three: Resource Allocation

11. Resource Allocation: Issues and Conclusions . . . . . . . . . . . . . . . . . . . . . . . . . . 139

Part Four: Policy Options

12. Policy Options . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 161

Appendices Page

A. Method of the Study . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 185

B. Legislative Overview. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 187

C. Glossary of Acronyms, Glossary of Terms, Acknowledgments,

Health Program Advisory Committee Members . . . . . . . . . . . . . . . . . . . . . . . . . 190

D. Public Outreach Survey . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 196

References. . ...... . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 205

vii
1

Introduction and Summary

. . . It is far more expensive to continue handicapping America than it

would be to begin rehabilitating America. Keeping disabled people in

dependency is costing us many times more than would helping them to independence.

—Frank Bowe
Contents

Study

Organization of the

Summary. . . . . . . . .

Technology . . . . .

. . . . . . .

Report

. . . . . . .

. . . . . . .

Resource Allocation . . . .

Policy Options ... , . . . . . . .

Page

. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5

. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6

. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7

. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9

. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13

. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14

FIGURE

Figure No, Page

l. Organization of the Report . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6
Introduction and Summary

Many people have significant limitations in

their ability to perform one or more important

life functions. These limitations either are present

from birth or result from injury, disease, or aging. They often result in disability and, less often

but still commonly, in handicaps. Whether a disability becomes a handicap depends on the interaction of the disabled person with the physical

and social environments surrounding that person,

and many other factors. Technology is one of

those other factors. This report is about technology, handicaps, and the ways in which technology

may be used to keep impairments from becoming disabilities and disabilities from becoming handicaps. It is about the processes involved in developing and distributing technologies and about

the governmental and social role in directing those

technological processes to assure the appropriate

distribution of technology. The report’s major

conclusion is that despite the existence of numerous important problems related to developing

technologies, the more serious questions are social

Photo credit: Barry Corbet Courtesy of North American Reinsurance Corp

Sports and physical activity are an important part of the lives of all people. Technologies, such as special

wheelchairs or sound-emitting baseball Is, are often used to allow the fulIer participation of disabled people.

Mary Wilson, shown above, believes that sports builds self-esteem and confidence, and improves attitudes

toward and among disabled people

3
4 . Technology and Handicapped People —

ones—of financing, of conflicting and ill-defined

goals, of hesitancy over the demands of distributive justice, and of isolated and uncoordinated programs.

The influence of technology is felt in nearly

every dimension of the lives of disabled people

and in policies relating to disabilities. In some

cases, technology is the cause of impairments, disabilities, and handicaps. Industrial accidents, adverse drug reactions, and automobile injuries illustrate this. In other instances, technology, especially medical technology, can eliminate or reduce impairments and keep them from becoming

disabilities. Knee implants and prescription eyeglasses are examples of medical technologies designed to do this. Furthermore, technology is used

to facilitate “mainstreaming” in education, to

prepare disabled people for employment or reemployment and to adapt the tasks and physical sites

of jobs to the capabilities of disabled persons, and

to create a controllable home environment. It is

also used extensively to prevent disabilities from

becoming handicaps—e.g., making transportation

systems and accommodations accessible. Technology enters the lives of disabled people in ways

that people without disabilities may consider

mundane—e. g., in the form of special utensil attachments or uniformity of traffic light bulb

placements. Yet even these types of technologies

are far from mundane. They may fulfill important needs and, when applied appropriately, may

make life easier, safer, and more fulfilling for

disabled and nondisabled people alike.

The state of technological capability in part

determines what legislation and regulations are

possible. It very clearly affects their implementation. The Federal and State Governments have

created dozens, perhaps hundreds, of programs

that relate to the “needs” of disabled persons. At

the Federal level, with which this report is most

concerned, there are programs (and agencies) concerned with research, income maintenance, health

care, education, transportation, housing, independent living . . . the list continues. An overview of much of the primary legislation for these

programs is presented in appendix B. Many of the

programs are described in the main body of this

report, especially in chapter 9. It is important to

understand the goals and operations of these programs, because not only are they affected by the

state of technology, they in turn very much affect the development and use of technologies.

Increasingly, attention is being focused on how

to effectively and efficiently implement the laws

and programs that are already in place rather than

on the passage of additional laws or establishment

of new programs. The State and Federal involvement continues to lack a comprehensive, responsive, and coordinated mechanism to administer

existing laws in the disability area. The volume,

diversity, and often contradictory goals of many

of the initiatives have tended to produce an administrative “gridlock,” where movement of any

kind, in any direction, is increasingly difficult.

Other byproducts of this Federal-State blend of

intervention and action are inconsistent definitions

of “disability” in the laws and confusing payment

or jurisdictional problems resulting from the

definitional issues.

This report presents the results of a study requested by the Senate Committee on Labor and

Human Resources. To support its broad responsibilities in the area of disabilities, the committee

asked OTA to take a comprehensive look at the

role played by technology in that area, identify

technology-related problems, and suggest policy

options for congressional consideration.

Congress and the executive agencies must create

and implement policies that are of various natures:

Some policies are concerned with broad questions

of social goals, while others are directed at more

narrowly defined objectives. Discussions with

congressional staff, executive branch agency personnel, the advisory panel to this study, and other

experts convinced OTA that in the area of disability-related technology, most of the focus has

been on the latter. Accordingly, OTA decided that

a study approach that first mapped the overall

policy field, paying special attention to the connections between the individual parts, was necessary. Then, specific technology-related processes

and problems were analyzed and broken down

into manageable questions. Finally, and most important, the specific analytical information was

synthesized in the context of broader social

questions.
Ch. 1—Introduction and Summary ● 5

The study concentrated on specific problems

by examining the development and use of technology as a lifecycle process—a complex flow of

ideas and technologies from conception, through

research and development (R&D), through diffusion (including marketing where appropriate),

to delivery and use. For each of these areas, OTA

examined the decisionmakers and the influences

on them, the other relevant parties at interest, and

the status of the area—including problems and

missed opportunities. This flow was examined

STUDY BOUNDARIES

OTA uses a broad definition of technology: the

practical application of organized bodies of

knowledge. Such a definition covers both hardware and process technology. The present study,

however, limits the definition of technologies, so

that the focus is on technologies that are intended

for and applied to individuals. Broader technologies, such as transportation systems, are covered

in this report only in the context of program and

societal-leveI examination of costs and benefits—

that is, the resource allocation and decisionmaking framework.

The study’s involvement in certain disabilities

and handicaps, as defined above and as expanded

on in Part One, has been tempered by pragmatism. For example, chronic diseases often lead to

major limitations in significant life functions; the

study does not ignore issues related to chronic

disease, but has tried to avoid becoming too involved with medical issues that are not substantially related to technology and the functional disabilities that stem from chronic illness. Similarly, the aging process often carries with it a gradual

lessening of functional abilities in various areas;

such disabilities are covered, but only as part of

the central theme of handicaps. Admittedly, it is

difficult and often impossible to separate issues

related to aging from issues directly related to disabilities. Some aspects, however, are clearly outside of the study boundaries. Others will be of

the same generic policy implications as more directly handicap-related issues and thus can be

covered profitably. In effect, the staff has tried

to exercise common sense and make boundary

decisions as the study required.

against a backdrop of appropriate development

and use of technology. And this backdrop in turn

was analyzed in relation to the demands of and

influences on resource allocation processes. These

last two steps were a process of synthesis—a combining of the more specific information gathered

with information on broader goals and methods

of decisionmaking. Policy options were generated

from both the specific analyses of problems and

from the more systems-oriented activities.

Prevention of impairments, disabilities, and

handicaps is covered only briefly, The issues involved in a full-scale inclusion of prevention technologies (e. g., highway safety technologies, prenatal screening and diagnosis, diet) are of such

magnitude that they deserve attention on their

own. Their importance should be recognized and

they should occupy a high priority in policy research agendas. To illustrate some of the issues

regarding prevention, a case study on passive restraint systems in automobiles is being issued as

a separate background paper.

This report was prepared during a time of uncertainty regarding Federal block grants to the

States for disability and other social programs. *

Whether substantial numbers of these programs

will become block grant programs in fiscal year

1983 is unclear, but the major conclusions and

most of the options of this study will not be greatly affected because development and use of technologies will most likely still be guided by much

the same forces as at present. The conclusions regarding the lifecycle of technology and assuring

appropriate development and use should be affected very little by block granting, It is possible

that there would be substantial positive effects if

the States organize their use of the block grants

around a comprehensive approach to delivering

and financing technologies and services. The ma-

‘The brief discussion concerning the possible effects of block granting refers to the use of block grants as opposed to the use of categorical grants or programs. It does not refer to the possibility of

a 25 percent across-the-board cut in grant funds, which would certainly affect the use of technologies by disabled persons.
6 ● Technology and Handicapped People

terial on resource allocation, of course, may have decisionmakers, but the generic issues would reto be viewed in the context of a different set of main essentially the same.

ORGANIZATION OF THE REPORT

The rest of this chapter presents a summary of parts. The relationship of the parts and the

the report and briefly lists the policy options. The individual chapters to one another is shown in

body-of the report-is then organized into four figure 1.

Figure 1 .—Organization of the Report

Part 1:

Disabilities

Part II:

Technology

Part Ill:

Allocating

Resources

Ch 1: Introduction and

Summary

I I

Ch 2: Definitions

and Demographics

Ch 3: Disability

Identifying and

Planning

J 1

I

Ch 4: Conclusions

Ch 5: Technology

and Appropriate

Application

t

Ch 6: Research and Ch 8: Marketing Ch 9: Delivery,

Development Ch 7: Evaluation and Diffusion Use, and

Financing

I I

Part IV

Policy

Options

SOURCE Office of Technology Assessment
Ch. 1— Introduction and Summary ● 7

—

Part One provides information on impairments,

disabilities, and handicaps. Chapter 2 provides

definitions and a discussion of the implications

of definitions. It also covers the problems of

demographic information on disabilities and handicaps. The third chapter presents the processes

of identifying impairments, disabilities, and handicaps, assessing those characteristics, and

developing individual plans for reducing them.

The goal of Part One is to provide background

information for the examination of technologyrelated issues. Chapter 4 sets out conclusions from

Part One.

Part Two presents chapters on the technology

lifecycle and the concept of appropriate technology. Chapter 5 covers the elements that should

be part of a framework for planning the appropriate development and use of technologies.

Chapters 6 through 9, respectively, address R&D,

evaluation, diffusion and marketing, and financing and use of technologies, The final chapter of

Part Two contains conclusions on the development and use of technology.

Because many of the critical problems of the

appropriate use of technology are financial and

social ones, Part Three then moves to questions

of resource allocation. Chapter 11 first presents

a brief historical sketch of resource allocation in

relation to disabilities. The main part of the

SUMMARY

What constitutes an impairment, a disability,

or a handicap? OTA’s approach to definitional

issues begins with the idea that society defines,

implicitly, a population of people with “typical”

functional ability. In contrast, society defines

those who cannot perform one or more life functions within the broad range of typical as “disabled” or “handicapped. ”

There are many possible definitions of the terms

“handicap” and “disability. ” Definitions are important because they affect the methods for identifying, and actual identification of, people in need

of assistance. OTA found that it is most accurate

to use the phrase “having a disability” in describing a person with some type of functional 1 imitation, given no specific background information.

chapter then discusses a series of critical issues of

resource allocation, including conclusions regarding resource allocation and its relationship to

technology development and use. It also discusses

a number of elements of decisionmaking that

might improve the process of allocating resources.

Part Four presents the policy options of the

study.

Appendix A describes the method used by OTA

to conduct the study and lists the background

papers published as separate volumes. Appendix

B is a brief overview of pertinent legislation. Appendix C contains the acknowledgments, the

membership of the Health Program Advisor-y

Committee, a glossary of acronyms, and a glossary of terms. Appendix D is a description of a

public outreach survey used by OTA to identify

problems and opportunities related to disability

policy.

A series of case studies was used to provide specific examples of issues and problems. The report

will make reference to the case studies throughout.

The full cases themselves are printed in a separate

volume of background papers.

In addition, a summary booklet is available.

It contains information similar to the following

two sections, summary and policy options.

A “handicap” has to be specified within its environmental and personal contexts. Disabilities

and handicaps arise from impairments, which are

the physiological, anatomical, or mental losses or

“abnormalities” resulting from accidents, diseases,

or congenital conditions. Generally, an impairment results in a disability when a generic or basic

human function such as eating, speaking, or walking is limited. It results in a handicap when the

limitation is defined in a socially, environmentally, or personally specified context, such as the

absence of accessible transportation to take the

disabled people to work.

Technology for disabled people plays the role

of improving the fit between individuals and their

environments. By making a distinction between
8 ● Technology and Handicapped People

——— — —

“disability” and “handicap,” OTA recognizes the

necessity of studying both individuals and the environments in which they function.

Another critical issue, closely related to definitions, is that of demographics—the numbers and

distribution of disabled or handicapped people.

In large part because impairments and disabilities

are not as objectively measurable as is desirable

and because handicaps may change depending on

their context, there is no dependable count of the

total number of disabled or handicapped persons.

Nevertheless, considerable time is spent by researchers and various groups in making such estimates. Some of these estimates range as high as

45 million, including more than 10 million children. Typical lower range estimates are from 15

million to 25 million people. Higher numbers may

reflect and attempt to count people with impairments; lower ones may be reflecting attempts to

count people with disabilities or handicaps. For

example, one study has estimated that approximately 12 percent of children have impairments

but that only about 3.9 percent have a limitation

of activity (see ch. 2).

Estimates of the number of people with disabilities are plagued by practical as well as conceptual problems. There is double counting of some

people with more than one disability, underreporting of some disabilities (in part due to the

stigma attached to being included on a list of disabled people), overcounting by organizations

seeking to make a strong case for the extent of

 . .

Photo credit Provided to OTA by Pat Berilgen, Great Oaks Center, Silver Spring, Md

This photograph shows Pat Berilgen assisting Danny Naylor in the use of a mercury head switch. The head

switch activates the music on the tape recording when Danny holds his head i n proper position. This training

is used to give a person greater control over the use of muscles and nerves to position the head
Ch. I—Introduction and Summary ● 9

a particular disability, and incomplete counting

of some disabled people, particularly those in institutions. A perhaps more important problem

with reported counts is that such counts usually

do not take into account the severity of the functional impairment reported. Agencies and organizations who attempt to identify populations

needing services should be very careful in designing surveys so as to take into account severity and

functional status as well as type of disability and

handicap.

Basic to the development and use of appropriate

technology are the procedures by which disabilities and handicaps are identified, goals for their

amelioration established, and resources to meet

the goals expended. The planning and assessment

methods used under three Federal programs—

vocational rehabilitation services, services for

developmentally disabled persons, and special

education services—are examined in this report

as a potential management information system in

order to analyze their effectiveness and efficiency in aiding or determining the appropriate use

of resources for modifying handicapping and disabling conditions.

To determine the effectiveness of planning and

assessment methods, it is necessary to examine the

degree to which data collected meet the needs of

Congress and the Federal agencies concerned with

the proper expenditure of public funds, and the

needs of the actual participants in the assessment

and planning process. Because the methods are

costly, their efficiency (outcomes in relation to

costs) must also be analyzed.

Technology

One of the necessary conceptual bases for an

examination of policies related to technology and

disabled people is a framework of “appropriate

technology.”*

A technology may be considered appropriate

when its development and use: 1) are in reaction

● By appropriate technology” OTA IS not referring to the same

concept as “Intermediate technology’ or ‘‘low-capital technology

Instead, the term refers to the appropriate development and, especially, application of technologies, See ch. 5 for a discussion of this idea.

to or in anticipation of defined goals relating to

problems or opportunities in the disability area,

2) are compatible with resource constraints and

occur in an efficient manner, and 3) result in desirable outcomes with acceptable negative consequences or risks to parties at interest. A

framework of appropriate technology and the attendant role of parties at interest in its definition

serve to put policies regarding the development

and use of technologies into perspective.

The key to appropriate development and use

of technologies lies in finding a compromise fit

between: 1) the needs, desires, and capabilities of

users and other relevant parties; and 2) the costs,

risks, and benefits of technologies. Analyzing such

a compromise may be relatively straightforward

when, for example, deciding to prescribe or wear

eyeglasses. In a case in which the disability in

question is of the type for which technologies such

as an artificial, myoelectric limb are being considered, however, the compromise decision process becomes extremely complex, and a framework

for analyzing alternatives becomes very important. Chapter 5 of this report presents several

factors —e.g., explicitly stating the goals of the

technology’s use—that should be part of a policy

approach to appropriate use. The factors presented are not intended to comprise a definitive

analytical framework. Furthermore, no framework is a solution; at the most, it will be an

organized method of structuring policy and technological problems.

The disability-related research and development

system includes both public and private organizations: Federal, State, and local governments; individuals; companies; universities; special interest

associations; and a number of other actors. The

people that the system is intended to assist possess

a broad range of handicaps and disabilities of

varying severity. The technologies that the system produces cover an even broader range, both

in type (including devices and process technologies

or services), in sophistication, and in purpose.

The Federal role in disabiIity-related R&D has

been steadily increasing in scope and magnitude,

although it remains small in comparison to the

number of people affected and the complexity of

the research problems involved. The organizations
10 . Technology and Handicapped people

— . —

expending the greatest effort, as measured by the

size of their relevant R&D budgets, are the National Institute of Handicapped Research (NIHR),

the Veterans Administration (VA), the National

Institutes of Health (NIH), and the Office of Special Education. The National Aeronautics and

Space Administration (NASA) is also involved in

this area as a result of technology transfer efforts

stemming from its primary mission. It collaborates

with the above agencies to transfer new technologies evolving from its R&D base.

A recent survey conducted for NIHR found that

the U.S. Government spends about $66 million

a year on R&D related to technologies for disabilities. However, the U.S. Government also spends

about $36 billion a year to support the income

of disabled people. Thus, its R&D expenditures

in this area represent only 0.2 percent of its transferpayments. By comparison, the Government’s

total health care R&D accounts for about 2 percent of its total health care costs.

Private sector involvement in R&D is difficult

to characterize or quantify. The companies and

organizations that conduct R&D range from multibillion dollar companies to small businesses to

nonprofit organizations, associations, and disease-specific foundations. Often, these companies

and organizations are the primary actors in the

development, delivery, and purchase of new technologies for their constituent groups. The R&D

funds used may come from the companies and

organizations themselves or from the Federal Government. Debate continues to surround the issues

of how much R&D is enough, who should do it,

and who should benefit financially from the complex interaction of private, public, and nonprofit-sponsored research efforts.

Significant efforts have been made at the Federal level in recent years to systematically establish

a comprehensive plan for identifying R&D needs

so that efforts may be coordinated in attempting

to meet them. The National Council on the Handicapped, which sets priorities for NIHR, and the

Interagency Committee for Handicapped Research, which coordinates Federal efforts, are important contributors to this effort. Still at issue,

however, is how the technical expertise of the various Federal agencies and the private sector can

be combined within current resource constraints

to continue to respond to the changing needs of

disabled people.

Despite problems, disability-related R&D is

characterized by innovation. Given sufficient

funding and an effective organization of efforts,

the predicted “explosion” in relevant technologies

could become reality. Advances in solid-state electronics, other communications/information developments, new alloys, microcomputer-aided

movement (e.g., of artificial limbs), and biomedical knowledge, including neurochemistry, are

already producing dramatic new possibilities. The

future may see an acceleration of technological

developments. Some advances, such as writing

aids for physically disabled children, may have

great value; others may turn out to be useless.

Most important, though, is planning for and identifying the appropriate ways to evaluate, distribute, and use the breakthroughs.

Evaluation of technologies involves a broad

spectrum of activities and a number of criteria.

Safety, efficacy, feasibility, and profitability are

the criteria often used first in evaluation efforts.

Criteria that follow include effectiveness, reliability, cost, repairability, convenience, affordability, esthetics, consumer satisfaction, patent protection, legal impacts, liability concerns, accessibility, economic impact, reimbursement status,

social implications, cost-effectiveness determinations, and ethical concerns. However, these important criteria are rarely, if ever, applied consistently to new technologies for disabled people

in the public or the private sectors.

There is, however, no shortage of agencies, organizations, and universities interested in the

various issues surrounding the evaluation of technologies. The level of the Federal effort in terms

of money spent on evaluation efforts is impossible to determine fully. The lead agency in evaluation of technologies for disabled people is

NIHR. Evaluation research supported by NIHR

is conducted along with basic research, applied

research, and technology development at the various NIHR-funded research centers, In theory,

evaluation research is an integral part of the R&D

process. In reality, it is often done only in an oversimplified fashion or with inadequate funding.
——.

HR does support some evaluation of devices

produced outside of its research centers. However,

the problems that there are not enough of these

activities. The Food and Drug Administration

(FDA), the National Bureau of Standards (NBS),

and NIH are three other agencies that focus on

evaluation of technologies at the Federal level, but

their efforts do not meet the evaluation needs in

the area of technology for disabled or handicapped persons. FDA evaluates medical devices

and drugs only; the NBS is short on time and

money; and NIH, through its Consensus Development Program and its clinical trials, cannot be

expected to maintain an adequate focus on relevant evaluative criteria (for the needs of this area)

or on disability-related technologies. The private

sector is also involved in the evaluation of technologies, particularly technologies that it develops

or distributes.

OTA finds that the public-private sector partnership is inadequately designed to support fully

useful evaluation efforts and that a coherent, adequately funded and focused program of evaluation is needed at all levels of diffusion and adoption of technology for disabilities.

Such a finding is particularly crucial in view

of the possibility of an increase in the number of

technological advances becoming available, such

as communications devices and mobility aids.

Diffusion and marketing of technologies for disabled people require quite different methods,

goals, and information than the R&D and evaluation efforts. The public-private sector interrelationship is particularly complex and close, and

each sector brings with it attributes which assist

as well as impede the process. In the disability

field, models of diffusion and marketing in the

general health care system and models of diffusion of innovations in the private sector—which

are not necessarily complementary—are often at

work simultaneously.

There are a number of successes in the diffusion and marketing of technologies that have been

directly related to Federal efforts to bring a product developed under a Federal R&D program to

private manufacturers for mass marketing and

distribution. VA, NASA, and NIHR are lead

agencies for these successes. However, such sucCh. 1—Introduction and Summary • 11

 .

cesses appear to be the exceptions. There are a

number of reasons: The disability market population is ill-defined; the economic status of users is

often far below the median; disability-related technologies often do not appear viable from a strictly

“market” perspective, resulting in a lack of private

interest in their production; product liability is

often perceived by manufacturers to be a problem,

and, especially, the systems for reimbursement of

devices sometimes provide disincentives to the

marketing of certain types of technologies. Two

additional issues in this area are the problem of

rapidly changing technology and the need to involve consumers to assure that diffusion and marketing efforts are appropriate and effective.

The use of technologies by disabled people appears to depend primarily, but certainly not entirely, on the public and nonpublic programs for

which the individuals users are eligible. This is

partly because many disabled people have lower

than average earnings and partly because the variety of programs which exist are the primary

source of information on available technologies.

Through their affiliation with these programs and

services, users either receive technologies directly, have them financed, or learn about them.

Although there are over 100 different Federal

programs serving disabled people, the majority

of public services are in the form of: 1) income

maintenance, 2) health and medical care, 3) social

services, 4) educational services, and 5) vocational

rehabilitation and independent living. The greatest

expenditures have been and continue to be for income maintenance, related transfer payments, and

health and medical care.

The major income maintenance programs are

Social Security Disability Insurance, Supplemental Security Income, VA pensions for nonserviceconnected disabilities, and VA compensation for

service-connected disabilities. Individual beneficiaries of these programs receive cash payments

with no restrictions on their use. The programs

influence the use of technologies not only because

they provide the funds to purchase the technologies, but also because they establish eligibility

for health, medical, and vocational-related services and technologies.
12 ● Technology and Handicapped People

The major publicly financed health and medical

care programs serving disabled people include

Medicare, Medicaid, and VA medical services.

The use of technologies is significantly affected

by the amount of funds provided by these programs, either to individuals or providers, by the

methods used to authorize payments, and by the

organization of the provision of services. Policy

issues that affect eligible Medicare and Medicaid

recipients include: what technologies are covered

and how are those decisions made, what types of

professions and institutions are recognized as providers, what amount is reimbursed for the cost

of covered services, what technologies are determined to be medically necessary, and what effects

the Medicare and Medicaid programs have on the

type and location of services to disabled beneficiaries.

The prime social services programs that serve

disabled persons are those authorized under title

XX of the Social Security Act and the developPhoto credit Courtesy of Phonic Ear, Inc , Mill Valley, Calif.

Aiding in preparing employment and carrying out job functions has always been one of the prime uses of technologies

for disabilities. This photograph shows a woman using the

Phonic Mirror Handivoice to communicate with her fellow

workers. The Handivoice speaks the words which the person

manually enters into it

mental disabilities program authorized under the

Developmental Disabilities Assistance and Bill

of Rights Act. Under these programs, a wide range

of technologies are directly provided to disabled

people. Thus, the major issue affecting the delivery and use of technologies is the determination

of eligibility for these programs.

The two largest education programs for disabled people are authorized under the Education

for All Handicapped Children Act and the Vocational Education Act. If necessary for receipt of

services under these programs, devices may be

funded. The programs are more important, however, for preparing disabled people to use technologies and for providing information on what

is available. The vocational rehabilitation and independent living programs authorized under the

Rehabilitation Act directly provide technologies

to eligible recipients for use in the workplace or

to live outside of institutions (in the case of severely disabled individuals).

Although the availability of public funds in support of public policies has greatly shaped decisions

in the private sector, nonprofit and for-profit private organizations are usually the actual providers

of services under public programs. In addition,

they provide services and funding not covered by

the public programs. Private insurance companies

provide income maintenance, although the total

amount is much less than the public programs.

Health and medical care is also provided; device

technologies are funded using criteria similar to

the public programs.

Several issues, related to the public programs

in general, affect the use of technologies by disabled people. They include: 1) the degree to which

services and funding are coordinated from program to program or are consistent from State (or

region) to State (or region), 2) the effect, on coordination and consistency, of the methods for determining eligibility, 3) the extent of the gaps in

eligibility for services under public and nonpublic

programs, 4) the degree to which maintaining rehabilitative device technologies is difficult or costly, 5) the degree to which consumers are effectively involved in services delivery, and 6) the

shortage of rehabilitation providers.
OTAs examination of the current system of disability-related research, development, evaluation,

diffusion, and use finds that the system suffers

from a number of significant weaknesses. The system is, or could be, capable of a great deal more.

There is a critical lack of attention being paid to

the concept of appropriate technology. Analytical

methods for determining and attaining appropriateness need to be developed and applied at each

point in the lifecycle of technology development

and use.

Information on available technologies is currently disseminated through publicly financed or

publicly operated programs for disabled people.

Information is often fragmented, since many of

the programs cover discrete subject areas and are

uncoordinated. Strengthened information dissemination in a coordinated fashion is urgently needed.

Providing disabled individuals with the advantages offered by technology requires the resolution of several policy issues. For example, what

type of provider is needed to match a technology

with a potential user? That is, who shall be responsible, in cooperation with the user, for identifying possible technologies, selecting a technology, fitting it to that specific user, and training

the user in its use? Strategies for encouraging the

use of appropriate types of providers need to be

developed. Another issue concerns the criteria for

selecting a particular technology once the type of

technology and its purpose have been decided.

Federal policies, including those involved with

financing, should encourage the consideration of

criteria such as rate of obsolescence, ease of maintenance, ease of actual procurement, and users’

preferences. Selection of a manual wheelchair over

a power wheelchair, for example, should be based

in part on criteria such as these.

Resource Allocation

Clearly, the development and use of technologies for disabled persons are greatly affected by

available resources and the ways in which they

are allocated. In fact, all decisions about the development and application of such technologies

are ones of resource allocation. Efforts to improve

resource allocation must take into account the incentives and controls currently operating on the

Ch.1—Introduction and Summary • 13

development, evaluation, diffusion, and use of

technologies. They must also examine the “fit” between the intentions of policy makers to assist disabled people (create opportunities for disabled

people to help themselves) and the actual assistance afforded by the available resources and the

rules governing their allocation.

Effective resource allocation must take into account a number of current issues in the disabilityrelated area. For example, to what degree should

definitions of disability and handicap used in

Federal programs focus on people’s abilities as well

as disabilities? An increased concentration on abilities could lead to the expenditure of a greater portion of resources to alter aspects of the environment that turn disabilities into handicaps. Another

example of a current issue in resource allocation

is the extent to which the Government should encourage and financially support independent living and the involvement of people with disabilities

in pertinent actions, such as evaluation of technologies or the determination of the types of personnel who will prescribe or fit technologies.

Other issues have to do with the types of outcomes sought in allocating resources, the degree

to which society and other decisionmakers support the development and application of technologies to prevent disability, the influence of an increasingly aged population has on resource allocation, and the proper role and use of analytical

techniques in allocation decisionmaking.

Since the quality of analysis directly affects the

resource allocation process, more attention needs

to be given to the development and use of analytical techniques. This report presents a series of

suggestions for helping to inform and structure

the decision process in order to: 1) clarify and

make explicit why a decision is being made and

what problem is being addressed, 2) assure that

all assumptions being made are explicitly stated

and subject to examination, and 3) force the orderly examination of all relevant potential consequences of any decisions. The goal is not to produce perfect decisions, but rather to make the

allocation of resources more sensitive to uncertainty and to a broader range of interests and

possibilities.
14 . Technology and Handicapped People

POLICY OPTIONS

The final chapter of this report presents policy

options for congressional consideration. Rather

than recommending specific actions, OTA’s policy

is to provide Congress with a series of alternative

actions and discussions of the possible consequences of implementing them. The options are

organized by issue area. In chapter 12, each issue

is described, findings related to that issue are

discussed, and a series of options is presented for

each issue. The issue areas for which policy options are provided are:

• How can the production, marketing, and distribution of technologies for disabilities be

encouraged and improved?

• How can the involvement of disabled persons and other pertinent consumer be increased and made more effective?

● How can the process of research, development, and evaluation of technologies related

to disabilities be made more responsive to

the needs of disabled people?

● How can financial barriers to the use of technologies by disabled people be reduced?

• How can Federal policies assure a welltrained and adequate supply of personnel in

disability-related disciplines and services?
Part One:

Impairments, Disabilities,

and Handicaps
2

Definitions and Demographic;

I hate definitions.

—Benjamin Disraeli

Round numbers are always false.

—Samuel Johnson
Contents

Page

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 19

Definitions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 19

Demographics: The Problem of Numbers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 20
Definitions and Demographics

INTRODUCTION

Data on impairments, disabilities, and handicaps are not only important as background information but are also critical to the creation and

carrying out of policy. There is considerable confusion among analysts, the public, and disability

workers concerning a number of definitional and

“counting” issues. What is a handicap? A disability? Impairment? How is severity classified? What

DEFINITIONS

OTA’s operational approach to definitional and

classification issues starts with the simple idea that

society defines, implicitly, a population of “normal” people; that is, people tend to think of the

“standard human model” as able-bodied, having

what are considered typical functional abilities.

Despite the fact that the range of what is considered typical is extremely broad, this concept

of normality or typical functional ability still has

great power to affect the way people think about

other people. In opposition to this concept of ablebodiedness, society defines those individuals who

cannot perform one or more of the typical life

[unctions within the accepted range as “disabled”

or “handicapped. ” The philosophical implications

and causes of categorizing people in this way are

beyond the boundaries of this study. Still, it is

important for policy makers to remember that the

type of functional limitations that come to be included in programs for disabled people are based

in part on this background concept and are in

many cases the result of arbitrary decisions.

For the purposes of this study, an exact definition of a “disability” is less important than the

idea that disabilities can be identified and can

often be eliminated, ameliorated, or bypassed

through technological intervention. For this purpose, a classification scheme based on the idea of

functional limitations will usually be more useful

is the difference between functional and categorical (disease- or condition-specific) classification?

How many people have what types of handicaps or handicapping conditions? Or, how many

people have what types of functional limitations?

What is the distribution of seventy, whichever ap

-

proach is taken’? Who is entitled to which programs?

to policy formulation than will one based on disease- or condition-specific diagnosis. For example, policies might be more rationally developed

and implemented in relation to the need to provide aids for certain types of mobility rather than

in relation to the fact that people have cerebral

palsy or some other specific condition. And, in

fact, the legislation enacted in the last few years

seems to recognize this advantage.

OTA finds that the most accurate general term

to use in describing a person with some type of

functional limitation, given no specific background (contextual) information, is “disabled.” A

“handicap” has to be specified within its environmental and personal contexts.

Impairment is the basic condition. An impairment is, in the ideal, an identifiable, objectively

measurable or diagnosable condition. An impairment is the expression of a physiological, anatomical, or mental loss or “abnormality. ” It may or

may not be the result of a pathological process.

An impairment is the physical or mental, and

causal, base of a disability and can be the result

of accident, disease, or congenital condition. Impairment implies an “impaired” functional ability of some sort and can be described in terms of

cause, severity, population distribution, etc. Impairments can lead directly to disabilities or to a

19
—

20 ● Technology and Handicapped People

—

nondisabled state. Loss of an arm through accident is an impairment. If no prosthesis is used or

if a prosthesis does not adequately compensate,

then the accident victim has a disability, a “dis”

(lack of) “ability” to perform certain functions

because he or she does not have use of two arms.

Disabilities apply to generic or basic human functions: walking, speaking, grasping, hearing, excreting, and so on. It is a much simpler concept

and a more objectively measured one than is

“handicap. ” The concept of a functional limitation can be placed in clearer perspective when it

is divided into the basic or generic function being

limited by the disability versus a socially, environmentally, and personally specified limitation,

which then becomes a handicap.

Aspirations or life goals must be taken into account when defining or identifying a handicap,

But the approach to taking these into account

must be one based on pragmatism. A person’s life

goals and self concept are a legitimate part of the

context of a handicap. Society doesn’t tell people that they cannot be computer programmers; the

choice of career is for the most part considered

a valid personal decision. This view may change

when society is asked to pay for the cost of special

training, the cost of civil rights or incentives programs to make it easier for a disabled person to

be hired, the cost of adapting the computer console, the cost of allowing accessibility to a worksite, and so on. But within a relatively small range,

there is little difference in such costs across a large

number of career choices. So, if a disabled person aspires to an occupation that will present no

handicap or a minor one, there may be no problem beyond the ordinary one of preparing for and

being hired for that position. If the disabled person aspires to one that presents a more severe—

or more difficult to reduce, eliminate, or bypass—

handicap, that should not be excluded from consideration, because the success of rehabilitation

may be increased by personal factors such as being

in, or training for, a desired job. The point is that

aspirations should not be automatically excluded

from the conditions differentiating a disability

from a handicap,

Finkelstein gives an example (88):

A man has had a leg amputated. He therefore

is impaired, and since he would have a reduction

of his locomotive ability, he is disabled. If, however, he has a satisfactory prosthesis . . . and a

car adjusted to hand controls . . . he might well

not be restricted in activity and therefore not

handicapped.

Technology thus can be used to increase the fit

between the individual and his environment. With

the use of this formulation of the distinction between “disability” and “handicap,” it becomes

necessary to view not only the individual but the

context in which he or she operates. A person,

therefore, may be handicapped under certain circumstances and at certain times. The disability

remains, but the handicapping environment

varies. Personal factors, such as poor self concept

or a defeatist attitude, may also turn a disability

into a handicap.

Although the concept of “typical” abilities can

be offensive to disabled and able-bodied people

alike, it is an important aspect of the definition

process. Without it, such ideas as functional “aspirations” may make identification of the disabled

or handicapped population even more difficult.

A test of reason must be applied. Playing symphony-quality flute is not a typical level of functioning. People who cannot do so may regard

themselves as handicapped, but that is not likely

to be a matter that society or its agents consider

to be worthy of public intervention.

DEMOGRAPHICS: THE PROBLEM OF NUMBERS

Another critical issue, closely related to definitions, is that of numbers: the demographics of the

numbers and distribution of impaired, disabled,

or handicapped people. For example, as described

in chapter 11, the allocation of resources is intricately dependent on valid and usable census

data of numerous types. These data are also vital

for planning and implementing actual projects and

programs at all stages of the lifecycle of technology development and use.

L

w . A
Ch. 2—Definitions and Demographics ● 2 1

There is no dependable count of the total number of disabled or handicapped persons. Indeed,

such a measure is conceptually ambiguous and

methodologically unsound, despite the visibility

it may have in public policy considerations. Still,

various groups and researchers do spend considerable time in attempting to establish such a count.

Estimates range as high as 45 million, including

more than 10 million children. Typical lower

range estimates are from 15 to 25 million people.

Generally, the higher range estimates represent

attempts to measure the number of impaired

Americans, while the lower ranges represent attempts to count the number with disabilities or

handicaps. For example, Butler, et al., report that

while approximately 12 percent of all children are

affected by some physical or mental impairment,

only 3.9 percent have a limitation on daily activities (26).

The Butler study also addresses another issue

related to “counts. ” Is the number of disabled people increasing or decreasing? Despite advances in

technology and the growth of such movements

as independent living, it may be that the number

is on the rise. As chapter 11 will cover, the percentage of the population that is 65 years and

older is rising, and this trend is expected to continue, with resultant increases in impairment and

disability. This fact does not have to mean that

“handicaps” will increase, but if the current situation with elderly people and the reaction of society

to them and their roles and abilities persists, an

increase in the number of elderly people might

very well mean an increase in the number of handicapped people.

Similarly, there has been a substantial reported

increase in the proportion of children with limitations of activity in the past decade. Between 1967

and 1979, the percent of children with some degree

of limitation nearly doubled, from 2.1 percent to

3.9 percent. Those seriously limited in function

showed a similar increase, from 1.1 percent to 2.1

percent. The reasons for such increases are not

clear (and readers should keep in mind the caveats

regarding statistics given in this chapter). It is likely that the increased numbers reflect a heightening of public awareness resulting in increased use

of services, an increase in the number of children

with serious diseases living longer, and artifacts

caused by reporting procedures, If the number of

children with activity limitations is actually increasing significantly, then the cost of services is

also likely to increase (26).

Although the overall trend in the numbers of

disabled people in the population is difficult to

establish, it appears that the numbers are increasing. The challenge, in any event, remains a dual

one—to decrease future disabilities while providing the appropriate climate and support for

minimizing the effects of existing disabilities (i. e.,

keeping them from becoming handicaps).

Apart from exhibiting conceptual problems, estimates of the numbers of people with disabilities

are plagued by a number of practical deficiencies.

Many individuals have more than one disability

and thus may be counted more than once. Counts

may also be inflated when reported by advocates

of people with particular disabilities or impairments—these advocates may select the highest

number in a possible range in order to help assure

that enough money is allocated to assist all those

who might need assistance.

Conversely, many people in institutions are

sometimes missed in “counts” of disabled people.

There are several other reasons why reported

counts are sometimes deflated. First, many of the

data on disabilities are self-reported. This method

has an unknown potential for misrepresentation

and bias, but it is generally believed that it leads

to underreporting. (In the case of certain impairments and illnesses, such as arthritis and influenza, this method may lead to overreporting, )

A related reason is that some people desire to exclude themselves or their children from lists of disabled people to avoid the stigma that is still often

attached to being disabled. This may be the primary reason for particular gaps in data pertaining to mental health and to those under 17 years

old. Finally, some of the data are collected from

places that work with disabled people; thus, individuals who are not being worked with or who

move are often excluded.

Problems in definition and classification are

manifested in attempts to collect demographic information. Given the range used in defining “impairment, ” “disability,” and “handicap,” it is not

surprising that there are many different definitions
22 ● Technology and Handicapped People

for words used in describing different types of impairments, disabilities, or handicaps. Furthermore, in counting those with a particular disabling

condition, it is often difficult to define when the

condition is definitely present. For example, epilepsy may cause substantial disability for those

affected. Yet it is not always active—epileptics

may be cured, or they may be free of seizures

owing to treatment. Conversely, the presence of

an epilepsy-like seizure does not always indicate

the presence of the disease. Different surveyors,

however, use different definitions to establish the

presence or absence of the disease (81).

Perhaps more important than problems in definition, however, are problems in classification.

At their simplest, these problems result from the

use of different categories by different authors,

so comparability is reduced. Yet the problem is

actually more complex, because the types of categories differ widely. The primary difference is

whether the disabilities or impairments reported

are classified by functional categories or by diagnostic (etiology-specific) categories. Examples of

the former include communication and mobility

disabilities; examples of the latter include retinitis

pigmentosa and spina bifida. Essentially, functional categories provide a context for an impairment by explicitly stating the disability that

results. Although functional categories are more

descriptive of effects than diagnostic categories,

they are equally difficult to standardize.

By focusing on categories of impairments, diagnostic categories often do not provide information on the severity of disabilities. In addition,

they obscure the interaction of the environment

with the disability and do not distinguish between

impairments, disabilities, and handicaps. On the

other hand, diagnostic categories do convey some

information on whether an impairment is static

or progressive and whether it reduces life expectancy—information which is often as critical to

policy makers as information on functional ability. Furthermore, these categories are reasonably

accurate and have commonly accepted meanings.

It is unlikely that there will be any agreed-upon

choice between the two methods of classification.

It is important, however, that the type of classification used suits the purpose for which the information was collected.

Surveys of the number of disabled individuals

can be deceptive in another way: They often do

not distinguish between: 1) mildly disabled individuals, who function at very nearly “typical”

levels; and 2) severely disabled or handicapped

people, who may be institutionalized, homebound, or critically dependent on a complex of

devices and services. Thus, reports that cite very

large numbers of disabled people maybe diluting

the attention devoted to certain segments of the

severely disabled population. Therefore, agencies

and organizations that attempt to identify populations needing services should be careful in

designing surveys so as to take into account severity and functional status as well as type of

disability and handicap.

The preceding problems having been noted,

some data on the numbers and impairments of

disabled people are presented below. These data

are provided primarily as examples to place other

problems relating to the development and use of

technologies in perspective.

Estimates developed from the 1977 Health Interview Survey provided the following numbers

on persons with selected impairments (64):

11,415,000 blind and (at least moderately) visually

impaired people; 16,219,000 deaf and hearingimpaired people; 1,995,000 speech-impaired people; 1,532,000 people affected by paralysis;

2,500,000 people with upper extremity impairments (not including paralysis); 7,147,000 people with lower extremity impairments (not including paralysis); and 358,000 people with the

absense of major extremities. The total is

41,166,000, and there are definitely overlaps.

Overall, 67 percent of the impairments are found

in the categories of blind and visually impaired

and deaf and hearing impaired. And, except

among those over 65, there are slightly more impaired males (52 percent) than females (48

percent).

An examination of the working-age population

is useful, because an inability to work because of

disability results, in our society, in income subsidization or in technological assistance to allow

employment. According to the Department of

Health and Human Services (70), in 1978, of 127.1

million noninstitutionalized working-age Americans, 17 percent, or 21 million, were limited in
Ch. 2—Definitions and Demographics . 23

. —

their ability to work due to a chronic health condition or impairment. While similar proportions

of men and women reported some degree of disability, a greater proportion of women were characterized as severely disabled. The prevalence of

disability increased with age—adults between the

ages of 55 and 64 were 10 times more likely to

be severely disabled than adults aged 18 to 34.

Severe disability was almost twice as prevalent

among the black population as among members

of other races. This higher prevalence among the

black population is apparent only when all disabilities are considered. If a particular condition

is viewed separately, cerebral palsy, for example,

the prevalence may be higher among the white

population (197). Cerebral palsy also appears to

affect people in all economic, social, or geographic

categories equally (197), but that is not the situation for all disabilities (70). Generally, disabled

people are much poorer and less educated than

the nondisabled, and this is particularly true in

the case of those who are severely disabled. As

pointed out elsewhere, however, statistics on average earnings and levels of education can be deceptive, based as they often are on people in or

known to public and private sector programs.

Thus, those people who are less educated and who

earn less are those most likely to be counted. This

does not mean that there is no problem of low

disposable income or of educational level among

disabled people; it merely implies that the most

successful disabled people may be counted less,

with implications not only for resource allocation

and statistical bases but also for the development

and maintenance of stereotypes and attendant

attitudes.
3

Assessing Disabilities and

Planning Services

Do not do unto others as you would they should do unto you. Their tastes

may not be the same.

—George Bernard Shaw
Contents

Page

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 27

Measures of Effectiveness. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 28

Determination of Eligibility . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 28

Determination of Services Required . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 29

Determination of the Effectiveness of Services Provided . . . . . . . . . . . . . . . . . . . . . . . . . . 30

Determination of Client Participation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 31

Summary of the Effectiveness of the Assessment and Planning System . . . . . . . . . . . . . 32

Methodological Issues in Assessment and Planning . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 33

Determination of Eligibility . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 33

Determination of Services Required . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 35

Determination of the Effectiveness of Services Provided . . . . . . . . . . . . . . . . . . . . . . . . . . 37

Technical Addendum to Chapter 3 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 39

Individualized Written Rehabilitation Program . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 39

Individualized Habilitation Plan or Habilitation Plan . . . . . . . . . . . . . . . . . . . . . . . . . . . . 40

Individualized Educational Program . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 40
3.

Assessing Disabilities and

Planning Services*

——— ———-— —-— ————— ——

INTRODUCTION

Basic to the development and use of technology

are the procedures by which disabilities and handicaps are identified, goals are established for their

elimination or reduction, and resources are expended. This chapter addresses: 1 ) the methods

for accomplishing the first two of these three functions, 2) the extent to which these methods are

effective in providing information to aid the third

function of allocating resources for the lessening

of handicapping and disabling conditions, and 3)

the extent to which these methods may be used

efficiently, since they are themselves costly.

The assessment and planning methods (or procedures) in the disability area can be considered

parts of a systems technology. The effectiveness

of this system should be measured by criteria that

are important to and determined by the users of

the system. The primary users of the assessment

and planning system, from the perspective of this

study, are Congress and the Federal agencies concerned with the allocation of public funds. This

chapter, therefore, examines the degree to which

data provided by the assessment and planning system are useful to or effective in public policy decisions. After focusing on the effectiveness of the

systems in generating such data, the chapter presents a methodological discussion of the techniques for identifying and assessing impairments,

disabilities, and handicaps. The chapter also discusses the degree to which the data collection procedures are or might be useful to the individual

*This chapter IS based on a paper presented for OTA by Dr Mark

02PT dthe &wrgeWrashlrtgton University School of Medlclne.

participants in the assessment and planning process.

The major laws dealing with the treatment of

disabled persons in three areas will be reviewed:

1.

2.

3.

the portion of Public Law 95-602 (the Rehabilitation, Comprehensive Services, and

Developmental Disabilities Amendments of

1978) dealing with vocational training and

rehabilitation,

the portion of Public Law 95-602 dealing

with developmental disabilities, and

Public Law 94-142 (the Education of the

Handicapped Act), dealing with the education of disabled children.**

The objectives of the assessment and planning

system are to provide data for the following: 1)

determination of eligibility for services, 2) determination of services required, and 3) evaluation

of the effectiveness of services provided. The next

section of this chapter examines these three goals,

from the perspective of the assessment and planning system’s actual or potential effectiveness in

providing data for policy decisions. The section

following that examines them from a methodological perspective.

‘ ● An overview of legislation in thi~ area ]s presented In app. B

Also, a note on terminology: Many of the statutes in this area use

the term “handicapped” instead of “d]sabled” in places where the

latter term would be more appropriate, according to OTA’S definition scheme, OTA uses the terms of the legislat ion onl}~ in quotes

horn those laws,

2 7
28 ● Technology and Handicapped People

— —

MEASURES OF EFFECTIVENESS

The measures of the assessment and planning

system’s effectiveness are based on the objectives

of the data collection system as determined by the

laws relating to disabilities.

Determination of Eligibility

The first objective of the assessment and planning system is the collection of data to determine

eligibility for services. Each law addressing disabilities has required that services be provided to

the appropriate persons. Although definitions of

which individuals are entitled to services vary, in

every instance some determination must be made

of the presence of disability.

Eligibility for vocational training and rehabilitation under Public Law 95-602 (Rehabilitation Act

of 1978) is defined as follows [sec. 7(7)(A)]:

The term “handicapped individual” means any

individual who (i) has a physical or mental disability which for such individual constitutes or

results in a substantial handicap to employment

and (ii) can reasonably be expected to benefit in

terms of employability from vocational rehabilitation services.

There is a requirement under this law to deal

with the needs of “severely handicapped” people,

and “severe handicap” has been given the following definition [sec. 7(13)]:

The term “severe handicap” means a disability which requires multiple services over an extended period of time and results from amputation, blindness, cancer, cerebral palsy, cystic

fibrosis, deafness, heart disease, hemiplegia,

mental retardation, mental illness, multiple

sclerosis, muscular dystrophy, neurological disorders (including stroke and epilepsy), paraplegia, quadraplegia, and other spinal cord conditions, renal failure, respiratory and pulmonary

dysfunction, and any other disability specified

by the Secretary.

Eligibility for services for developmentally disabled persons under Public Law 95-602 shares the

basic requirement of an impairment of a physical

or mental nature but defines more functionally

the areas of disability that may occur as a result

of such an impairment [sec. 102(7)]:

The term “developmental disability” means a

severe, chronic disability of a person which (A)

is attributable to a mental or physical impairment

or a combination of physical and mental impairments; (B) is manifested before the person attains

age twenty-two; (C) is likely to continue indefinitely; (D) results in substantial functional limitations in three or more of the following areas of

major life activity: (i) self-care, (ii) receptive and

expressive language, (iii) learning, (iv) mobility,

(v) self-direction, (vi) capacity for independent

living, and (vii) economic self-sufficiency; and

(E) reflects the person’s need for a combination

and sequence of special, interdisciplinary or

generic care, treatment, or other services which

are of lifelong or extended duration and are individually planned or coordinated.

This definition also extends to the severity of the

problem in that it is long lasting and starts prior

to adulthood.

The eligibility criteria in Public Law 94-142

(Education of the Handicapped Act) establish the

need for special educational services on the basis

of multiple evaluations in several functional areas

by multidisciplinary teams as follows [sec. 12a5]

(Federal Register, Aug. 23, 1977):

The term “handicapped children” means those

children evaluated . . . as being mentally retarded, hard of hearing, deaf, speech impaired,

visually handicapped, seriously emotionally disturbed, orthopedically impaired, other healthimpaired, deaf-blind, multi-handicapped, or as

having specific learning disabilities, who because

of these impairments need special education and

related services.

At first glance, this definition is the least functional of those presented so far, but it is amplified

in the regulations, which further define each category, so that it is at least equal to the others in

its functional orientation.

In all three laws, there is a requirement for

documentation of impairment and functional limitations resulting from such impairments. An administrative decision must be made regarding the

presence of “disease. ” The data from such disability determinations can be used in individual

cases to justify the expenditure of public funds for
Ch. 3—Assessing Disabilities and Planning Services ● 2 9 — .—— .

disability-related services, These data are a prerequisite for accountability, but they have only

limited value for the determination of appropriate

services for individuals or for any specific category of persons.

The prime function of such determinations is

to document the presence of impairments. One

measure of the effectiveness of the assessment and

planning system, therefore, is the degree to which

data might be generated on the incidence of such

impairments in the population. Such data would

presumably be valuable to States and Federal

agencies for more rational planning with respect

to the amount of resources necessary for various

categories of impairment.

The State plans required from each State to

establish eligibility for Federal funds under Public

Law 95-602 do require reports that include estimates of the disabled individuals requiring services, with particular emphasis on those with most

severe disabilities. The law also requires estimates

of service costs for such categories. Furthermore,

it requires continuing statewide studies of the

needs of handicapped individuals and how these

needs may be most effectively met , . . with a

view toward the relative need for services to significant segments of the population of handicapped individuals and the need for expansion of

services to those individuals with most severe

handicap” [sec. 101(15)].

The requirements for identification of disabled

children under the provisions of Public Law

94-142, in order to assure accountability in Federal

reimbursement, are very specific. The State education agency is required to report data on the numbers of disabled children within each category of

disability and their age distribution [sec.

121a.751]. However, the data are frequently inaccurate, and the estimates of the numbers and

types of disabilities are considered to be highly

unsatisfactory. Many children are incorrectly classified as disabled; others possess undetected disabilities. There is wide variation in the criteria

used to assess the severity of a disability. Children, particularly those from minority groups, are

often falsely identified as having impairments

(109).

In fulfillment of Public Law 95-602, a component of each State’s evaluation system for developmental disabilities specifies a requirement for

“client identification and demographic data” [sec.

110]. This includes age and sex, ethnic group and

income level, as well as whether the person is living in an urban or a rural setting. Data are to be

collected on the type and degree of impairment

based on various assessment scales (145). Unlike

data collected under the requirements of Public

Law 94-142, such data are collected in a variety

of functional areas, reflective of the definition of

developmental disabilities in the law. The definition in Public Law 95-602 does not mention categories in terms of “disease” entities as does Public

Law 94-142. Furthermore, the data collected under

the former law, in contrast to the latter data, are

not primarily to be used for determination of eligibility for programs or for reimbursement of

service costs, but rather for purpose of evaluating comparable effectiveness in terms of “case

mix. ”

Determination of Services Required

The second major objective of the planning and

assessment system is the collection of data for the

planning of appropriate services to persons who

are deemed eligible. The evaluation process designed to determine eligibility has been expanded

to deal with determining the specific problems of

individuals and establishing plans for services.

In the area of vocational rehabilitation, Public

Law 95-602 specifies that the evaluation to determine “rehabilitation potential” should be not only

a component of the determination of eligibility

but also a part of an individualized written rehabilitation program (IWRP). The IWRP specifies

the services and technologies to be provided to

the individual and also the goals for the use of

those interventions (see the technical addendum

to this chapter for those specifications).

The law relating to developmental disabilities

as amended most recently (Public Law 95-602) has

comparable requirements for the development of

a habilitation plan for each developmentally disabled person (see the technical addendum to this

chapter).
30 • Technology and Handicapped People — — - —

Like the requirements for vocational rehabilitation, but unlike the requirements for developmentally disabled individuals, Public Law

94-142 deals with the character of the evaluation

procedure in some detail. It also deals with the

character of the individualized educational programs (IEPs) to be developed for each disabled

child. Comparable requirements for parental participation are highly specified (see the technical

addendum to this chapter for the law’s language

relating to IEPs).

In these three laws, the procedures required for

data collection have moved beyond the categorization of impairments alone. The evaluation process is now concerned with sampling functional capabilities in a variety of areas so as to lead to a

rehabilitation program plan for each individual

disabled person.

Despite the focus on the assessment of function

rather than impairments, each such assessment is

usually carried out in a framework of expected

“norms” or standards. That is, the determination

of the existence of a problem is generally derived

from tests and other evaluation instruments that

have been standardized in “normal” populations.

Thus, data are collected on the areas of function

in which the person is to be considered “deviant. ”

These findings are translated into a set of “remedial” objectives and can be used to justify why

any particular set of objectives has been chosen.

Even though such procedures may be a prerequisite for accountability of the objectives, they

have limited value for the determination of the

actual objectives that should be established for

any individual. The data derived from the behaviors sampled on standardized tests frequently lack

specificity as to the day-to-day problems that

should affect the objectives set for individuals.

Because the prime function of such problem

identification is to establish a rehabilitation program plan, one measure of the effectiveness of the

assessment and planning system is the degree to

which data have been generated for use in determining and planning appropriate services. The

decision regarding which services to use and to

what degree is a crucial one; assuring the appropriate use of technologies—both services and

devices—for each individual is one of the critical

goals of any effective assessment and planning

procedure.

Although data could potentially be generated

on needs for technology and other services, an

analysis of the various laws and the regulations

to implement them indicates that the generation

of such data remains highly unlikely at the present time. Only in the case of the portion of Public

Law 95-602 dealing with developmental disabilities is the evaluation system to be implemented

directly linked to data derived from the habilitation plans. One of the components of each State’s

reporting system is to include “service characteristics. ” Included in this category are data on each

service received in terms of hours of service, frequency, type of provider and professional level

of provider. In addition, each service planned for

(or required) but not rendered is to be categorized as to its being scheduled (awaiting an opening or some other reason) or not available (due

to “lack of funding” or “no appropriate service”).

In this highly developed system, clear potential

exists for the collection of information on the

needs, both met and unmet, for services and other

technologies (145). The developmental disabilities

evaluation system is not yet in place throughout

the country and has met with considerable resistance by a number of the States.

Determination of the Effectiveness

of Services Provided

The third major objective for the assessment

and planning system is the collection of data that

could be used to evaluate whether services and

other resources expended have been effectively

used. This objective has been reflected, at least

in part, in the ongoing evaluation provision within

each of the laws discussed in this chapter. Some

measure of outcome is required in each instance.

For persons enrolled in vocational rehabilitation programs, reassessment goes on at two different stages. During an extended evaluation period to determine vocational rehabilitation potential, the focus is on data that would support the

decision to maintain eligibility. The IWRP developed following this evaluation period must include “a procedure and schedule for periodic

review and evaluation of progress toward achiev-
Ch. 3—Assessing Disabilities and Planning Services ● 31

ing rehabilitation objectives based on objective

criteria and a record of those reviews and evaluations” ([361 .41(a)(5)] (Federal Register, Jan. 19,

1981). The State plan for vocational rehabilitation services must also include “an evaluation of

the effectiveness of the State’s vocational rehabilitation program in achieving service goals . . . as

established in [its] plan” [361.17(c) 1 (Federal Register, Jan. 19, 1981 ). There is no specific provision for the use of data derived from the IWRPs

as to the degree of accomplishment of objectives.

There is merely a requirement that there be documentation of the existence of these data in case

records.

The existing reporting system based on the evaluation standards issued in 1975 moves in its

Standard No. 6 toward the assessment of client

outcomes. It seeks “to insure that the clients

rehabilitated retain the benefits obtained from the

rehabilitation process. ” To determine the degree

to which this standard is met it is necessary to collect data on the percent of rehabilitated clients still

employed at 1 year, 2 years, or 3 years after closure of the case; their earnings; and the percent

of time unemployed (86). A more comprehensive

information system has been designed by the

Rehabilitation Services Administration (RSA) but

is not yet in place. This projected system is described later in this chapter as providing the potential for assessment of the effectiveness of services

provided.

In the education of disabled children, the IEP

has as one component a reassessment, on at least

an annual basis, to determine whether short-term

instructional objectives are being achieved. However, failure to achieve the stated objectives is not

necessarily tied to the services provided (84):

Each public agency must provide special

education and related services to a handicapped

child in accordance with an individualized education program. However . . the Act does not require that any agency, teacher, or other person

be held accountable if a child does not achieve

the growth projected in the annual goals and

objectives.

Unlike the vocational rehabilitation data collection system, there is provision of the collection

of data derived from IEPs at a State level [sec.

121a232] (Federal Register, Aug. 23, 1977).

Most far-reaching is the commitment to evaluation of effectiveness of services for people with

developmental disabilities. The portion of Public

Law 95-602 dealing with such disabilities mandates an evaluation system and ties it directly to

data derived from the habilitation plans. State

plans are required, under this section of the law,

to phase in such an evaluation system as a condition of receipt of Federal funds with implementation of each State’s system of October 2, 1982.

Program effectiveness is to be judged, with data

from habilitation plans, on the results of services

provided to clients. The primary measure is that

of changes in developmental status from entry

into service to completion. Functional assessment

scales are to be used, employing tests meeting specified criteria of reliability and validity appropriate to the areas of concern. There is an opportunity, therefore, for service providers to choose

their own measures that will take into account the

variability of clients and the need to use different

scales. Data are to be collected on the numbers

of clients by level of developmental status at entry and at the end of the reporting period. Thus,

the percentage of clients making progress (or

regressing) can be calculated (145).

Still another measure projected by this system

is the proportion of client objectives achieved to

the number of planned objectives. An analysis of

costs and effectiveness can then be done using data

on the cost of the services provided. In both these

measures, further breakdown of effects can be determined by data concerning age, sex, type of disability, and area of primary functional limitation

(e.g., self help, communication). Particularity

noteworthy is the opportunity in this evaluation

system to report data from the States as to the

comparable effectiveness of similar programs.

Determination of Client Participation

In addition to the three major objectives of the

assessment and planning system, a fourth objective is the participation of individuals in planning

for their own needs. The evaluation process leading to individualized plans for treatment has been

expanded in principle from one carried out for disabled persons to one potentially’ carried out with
32 • Technology and Handicapped People

disabled persons, with their parents or guardians,

or with both.

Each of the laws discussed in this chapter has

stated a commitment toward such participation.

This provision recognizes that the underlying goal

of treatment is independent functioning on the

part of disabled persons; the very process by

which plans are made may be seen as contributing

to such a goal. More directly relevant to the emphasis of this study, the appropriateness of the

technology recommended, whether training or devices, may be expected to increase if the user(s)

are participants in the planning decision.

In the area of vocational rehabilitation, client

participation in IWRP development is one aspect

of the case record to be monitored in State plans.

The regulations implementing Public Law 95-602

describe such participation as follows (85):

The individualized written rehabilitation program must be developed jointly by the . . . staff

member and the handicapped individual, or as

appropriate, his or her parent, guardian or other

representative . . . A copy of the written program [must be provided] and each handicapped

individual [must be advised] of . . . procedures

and requirements affecting the development and

review of individualized written rehabilitation

programs . . . The State must assure that the individualized written rehabilitation program will

be reviewed . . . at least on an annual basis.

Each handicapped individual . . . must be given

an opportunity to review the program and, if

necessary, jointly redevelop and agree to its

terms.

Documentation within the record of the IWRP

is to include “the views of the handicapped indi- - .

vidual, or, as appropriate, his or her parent, guardian or other representative, concerning his or her

goals and objectives and the vocational rehabilitation service being provided” (85).

In the case of developmental disabilities, the habilitation plan is similarly required to be developed jointly with the person and, where appropriate, such person’s parents or guardian or other

representative. Further, at the time of the at least

annual review of such a plan, “in the course of

review, such person . . . shall be given an opportunity to review such a plan and participate in

its revision” (214). Documentation of such participation would presumably be included in the

requirement for assurances from the States in their

State plans that habilitation plans are being adequately implemented. However, there is no provision within the design specifications of the new

comprehensive developmental disabilities evaluation system for direct incorporation of such data

as parental participation. It is unlikely, therefore,

that data on participation would be readily available for policy review on an easily accessible basis.

There are extensive provisions within the regulations implementing Public Law 94-142 for the

disabled child’s (parents’) participation in the entire assessment and planning process. At present,

however, there is no management information

system that collects data on actual parental participation. Such data would ordinarily be collected

in the course of sampling IEPs in field reviews.

Summary of the Effectiveness of the

Assessment and Planning System

The collection of data from individualized program plans could be particularly crucial to planning for technological needs. However, the existing vocational rehabilitation information system

does not incorporate data derived from IWRPs

as to the services required. The projected developmental disabilities evaluation system does attempt to incorporate data on specific service requirements. There is no expectation that such information will be collected on the education of

disabled children.

Measurements of the effectiveness of the services actually provided are also potentially available from the individualized program plans.

Again, however, the existing vocational rehabilitation information system does not collect data

directly from IWRPs. The projected developmental disabilities evaluation system does have that

potential. Although existing regulations make provision for the collection of data on the education

of disabled children, there is no plan for the direct

collection of data as to effectiveness of services

from IEP review.
Ch. 3—Assessing Disabilities and Planning Services ● 33 —

Measurement of the degree of participation of The next portion of this chapter examines the

disabled persons in the planning process is general- technical and other difficulties in the assessment

ly carried out as a component of administrative and planning approaches being used in individual

reviews but not part of any projected management cases.

information systems.

METHODOLOGICAL ISSUES IN ASSESSMENT AND PLANNING

This section, as the previous one, is organized

by the three major objectives of the assessment

and planning system: 1) determination of eligibility, 2) development of an individualized plan for

rehabilitation (“determining need for services”),

and 3) evaluation of the individualized plans’ ability to contribute to assessment of the effectiveness

of services.

Technical and methodological issues arise with

each of these objectives. Each of the program

areas being surveyed-vocational rehabilitation,

developmental disabilities, education of disabled

children—share these issues. For purposes of the

analysis in this section, however, the methods in

use for the determination of eligibility will be explored in the area of education of disabled children; the development of functional plans will be

explored primarily in the area of developmental

disabilities; and evaluation of the effectiveness of

services will be explored primarily in the area of

vocational rehabilitation.

Determination of Eligibility

There is a distinction between the methods appropriate for the determination of eligibility and

the methods that may be required for the generation of individualized plans. This distinction is tied

to the identification of impairments, as required

by each of the existing laws, versus the identification of actual functional disabilities that may result from such impairments. In the following discussions, it is important to remember that although the various laws use the term “handicapped” interchangeably with “disabled,” OTA

reserves the term “handicapped” to mean the

result of the interaction of a person with a disability and the environment, as set forth in chapter 2,

Several of the methodological issues concerning the determination of eligibility lie in the

medical framework from which many

methods arose. In Nagi’s formulation

of the

(148),

various etiologies (or causes) such as infection,

trauma, or metabolic imbalances interrupt the

normal processes of the body. The body responds

to such interruptions by mobilizing its defensive

and coping mechanisms in an attempt to restore

a normal state of existence. These responses are

then observed as a state of pathology. Modern

scientific medicine is concerned with the relationship of pathological findings to underlying causes.

Treatment in the medical framework is intended

to help the organism regain equilibrium by providing medical or surgical intervention.

Medically, impairments are findings of loss or

deviation from the “norm” which may be a result

of active pathological processes but may also remain even after the underlying causes are no

longer operative. For example, impairments such

as congenital deformities may be thought to have

occurred as a result of infection or some other

harm prior to birth. These impairments are described in terms of the organs affected. Their prognosis, such as prospects for recovery and stabilization, is also described. The medical questions to

be answered by the history and physical examination are: 1) the nature of the disorder or disease

process; 2) the activity of the process (acute exacerbation, remission, or exhaustion of active disease; 3) the specific structure and site affected; 4)

what medical treatment is appropriate and its possible complications.

Some of the data collected by the medical approach are relevant to the treatment of persons

who also have disabilities, but it is important to

recognize the limitations of this model of data collection, derived as it is from acute illness. For persistent conditions, the determination of impairment tends to place “undue emphasis on morphological diagnosis with . . . subordination of func-
34 • Technology and Handicapped People — -- -. —

tion to form, and . . . pathological phenomena One of the difficulties with this approach is that

are considered as though they are unrelated to the the criteria by which children are assigned to a

individual in whom they become manifest” (229). specific category are elusive and ill defined. Such

For the affected individual, it is not so much the categorization is almost always arbitrary and subunderlying disorder and its resultant impairments ject to disagreement.

that are of greatest concern but the manner in The present system of categorizing “deviant which they impinge on everyday life (87). Further, an impairment does not necessarily indicate children” has come under recent attack as being

that disease is present or that the individual should culturally biased. Opponents maintain that the

be regarded as sick. One basic methodological taken-for-granted value framework in which professionals operate (using tests based on the total issue, therefore, is the use of experience and population) limits the opportunities of children models based on acute illness to establish meth- with minority backgrounds. The central issues ods for the analysis of long-term problems. here are both technical and, even more important,

Even less appropriate is the extension of this

set of medical questions to intellectual and mental impairments in fields such as mental health or

education. Except for certain organic diseases,

there is an absence of any ability to differentiate

indicators of pathology, impairment, and disability. The manifestations are behavioral. There is

an absence of well-established criteria for classification relevant to decisions as to treatment. Different sets of criteria may result in differing reported patterns of disability (148).

Despite such incongruities, however, the same

methods in use for the determination of disease

are used in education. Diagnosticians in this field

are concerned whether “disease” in the guise of

developmental differences is present. Categories

of “problems” have been established by tests based

on “norms, ” For example, the diagnosis of “learning disabilities” has, at least historically, been established in large part by a child’s scoring lower

on the performance subtests and higher on the verbal portion of the widely used Wechsler test. Considerable effort is devoted to relating patterns of

“deviance” to some causal event(s) in the life of

the child. Thus, children with developmental

problems are categorized as “brain injured, ” “emotionally disturbed, ” or “culturally deprived. ”

Other categories in use are designated on the basis

.

conceptual and ethical (142).

The problems of the existing classification system are summarized in the report of the Project

on the Classification of Exceptional Children

(109):

To call a child retarded, disturbed or delinquent reduces our attentiveness to changes in

development. To say he is visually impaired

makes us unappreciative of how well he can see

and how he may be helped to see better . . . competent authorities agree that categories impede program planning for individual children by erecting artificial boundaries, obscuring

individual differences, inhibiting decisionmaking by people closest to the problem,

discouraging early return of children to the

regular classroom, harming children directly by

labeling and stigmatizing, and denying service

to children with multiple handicaps and to other

children who do not fall into neat categories.

The methods for determining the existence of

impairments, and thus eligibility for services, in

the various program areas are derived from a

medical framework, which is often applied inappropriately. The methods often depend on categorizations that are frequently incorrect—and

when presumed correct, are frequently harmful

to the individuals involved.

of some functional problem, presumed abnormali- The methodological limitations of the data acty in some specific site in the-nervous system, and tually collected using the medical frameworkpresumed cause. Dyslexia, for example, is the di- based process are even more germane to the issue

agnosis for a functional problem in reading asso- of the appropriateness of services provided. To

ciated with a presumed abnormality in the visual a considerable degree, a small number of standcortex of the brain and a strongly positive fam- ardized tests are given to determine a child’s . 

ily history of similar difficulties. educational program. Keogh (120) pointed out the
potential inappropriateness of data derived from

psychological testing. The normative (based on

“norms”) framework provides quantification that

may be excessively generalized, such as the intelligence quotient (I.Q. ) used for placement for

mentally retarded people. Qualitative data on the

functional characteristics of persons (e.g., how

they organize, the kinds of cues they select to

guide their actions, their speed of decision, and

their persistence) are not collected by the standardized measures currently in use, despite the documented relevance of such traits (38).

The methods in use to determine eligibility have

been ineffective in providing useful data even for

the purpose of appropriate placement of the child.

The operation of Public Law 94-142 has, in addition, increased the use of these determinations of

eligibility. That law has placed a premium on the

identification of disabled children in order to receive Federal reimbursement for each child identified. Support has been given for finding larger

numbers of disabled children despite considerable

question as to the figures projected (99).

Under Public Law 94-142, the goal of parental

involvement in the process of determining eligibility has led to the provision of due process hearings and a full system of legal recourse. The existence of legal remedies has been cited as one

cause of what appears to be excessively comprehensive testing (99). Such testing may be done as

a precautionary defense against possible legal action. Yet the data derived from standardized tests

are frequently inadequate to deal with disputes

as to eligibility. The actual tasks of a classroom

are not sampled; data are not collected about the

conditions under which the child functions most

effectively. The methodological limitations of the

procedures in use to determine eligibility may contribute to perhaps unnecessary litigation rather

than to problem resolution.

In summary, the eligibility determination methods may be ineffective in aiding decisions about

appropriate educational placement, particularly

in the face of cultural diversity and the need for

flexibility to create or use “least restrictive environments. ” The methods are often inefficient,

perhaps because they are burdened with substantial demands for evaluations of questionable utilCh. 3—Assessing Disabilities and Planning Services ● 35

ity. They yield insufficient specificity on the characteristics of identified problems in a child. Rather

than contributing to effective parental involvement, they frequently limit and obscure potential areas for collaboration between parents and

schools.

Determination of Services Required

The development of individualized program

plans is the second stage of the assessment process. These are relatively new requirements, and

there is a less highly developed methodology to

deal with the identification of problems in functional terms, the identification of the appropriate

means by which problems may be solved, and

ultimately the making of the plan to do so.

The focus in planning is shifting from the delineation of impairments inherent in the determination of eligibility to the delineation of disabilities. However, the distinction is sometimes

difficult to apply, because the medical model so

prevalent in the area is oriented to the identification of patient problems in terms of impairments.

The “medically based” concept of disability is derived from the concept of loss of function or “deviation from the norm” used to establish the existence of disease in the first place. Thus, this

merging of the concepts of impairment and disability permeates the methods for problem identification and for planning rehabilitation.

The notion of (re)habilitation used by the

World Health Organization indicates some of the

limitations of the standard concept. It has been

defined as “the combined and coordinated use of

medical, social, educational, and vocational measures for training and retraining the individual to

the highest level of functional ability” (229). This

specification puts little emphasis on the individual

autonomy of the client in the rehabilitation process and concentrates on professional actions—

doing something to and for somebody. Wood advocates a definition such as “restoration of patients to their fullest physical, mental and social

capabilities, within the limits of a disability” (229).

The inference is that the person has been placed

at a disadvantage in failing to fulfill what has been

expected of him or her because of the presence

of illness or other disorder. Wood feels that it is
36 ● Technology and Handicapped People

then possible to begin to formulate objectives such

as maximizing performance and promoting expectations commensurate with altered capabilities.

The ultimate goal, again according to Wood, is

restoration of the patient’s good name, which involves exploration of new roles that are acceptable both to the individual and to society (229).

A different approach has been advocated by

some disabled persons and eloquently expressed

by Finkelstein (88). He suggests that “disability”

be viewed as a special class of social relations between persons with impairments and their social

and physical environment. As chapter 2 indicates,

OTA prefers this approach, but uses the term

“handicap.” The traditional analysis, inherent in

the concepts expressed by Wood, has been that

the person with impairments has failed to meet

the socially imposed nondisabled standards of

typical functioning. Finkelstein suggests that the

focus should shift to the social context in which

the problem exists. The example is given of the

wheelchair user as being unable to get through

the doorway. The focus is on the architectural barrier. It is an architectural problem and it can be

studied, analyzed, and solved independently of

the individual disabled person. Focus may then

shift from the disabled person(s) to the environment, which may be modified.

The methodological issues in the making of an

individualized program plan may be analyzed in

light of this background. The step of problem

identification is crucial to the making of an appropriate plan. To a considerable degree, the

framework of expected behavior or “norms” has

been retained from the medical approach, which

focuses on the areas of loss. The assessment procedures identify areas of deviations from a

“norm.” To an even greater degree, the focus has

been on the disabilities residing in the person, and

not on those in the environment nor on the inappropriate interaction between person and

environment.

The procedures in use with persons with developmental disabilities will be analyzed as an

example.

The characteristics of developmentally disabled

people, more specifically those who are defined

as mentally retarded, require considerable precision in designing rehabilitation programs. Progress may be expected to be slow, but it may be

enhanced to the degree that training program objectives are clearly defined. Assessment instruments (tests) leading to a more precise identification of functional problems have therefore proliferated (75). These behavioral rating scales are

used for prescriptive purposes rather than the

diagnostic purposes of the general intelligence

tests. They are applied directly to the design of

individualized program plans and are thus useful

at the time of re-test as a measure of progress in

meeting objectives. If used on a wide scale, they

may also be used for overall program evaluation.

At their best, these behavioral scales describe

the levels of function an individual has reached

and is able to reach rather than simply what the

individual is unable to do. They also describe the

criteria to be met rather than attempting to relate

those criteria to standardized “norms. ” The selection of the particular functional content areas to

be sampled, still reflect the cultural bias of the test

developers.

Far less highly developed are rating scales which

sample the environment in which the individual

is required to function. An individual’s developmental progress may also come about by changes

in the environment. Many of the existing “environmental” assessment laws require a focus on the

“least restrictive environment” (75). As such, categories examined in environmental assessment tend

to include such things as the degree of autonomy

permitted and the exercise of individual rights, as

well as the amount of activity available in programs. Particularly noteworthy is the Community

Adjustment Scale, which directly samples both

the individual’s ability to perform tasks and the

opportunities afforded by various sites available

to the individual to perform those skills (75).

Despite the wide range of rating scales available, many important areas of function are apparently not ordinarily surveyed in relation to

developmentally disabled people. These include

functions related to work habits and work adjustment, as well as emotional development.

All the instruments surveyed are concerned

with the measurement of status. That is, data are

collected concerning what the person is able or
Ch. 3—Assessing Disabilities and Planning Services • 37

unable to do. Data are not collected concerning

the conditions under which the person has been

able to accomplish whatever has been accomplished. Data are not collected regarding the process by which development has come about and

might come about in the future. The failure to collect such data is inherent to the testing model that

underlies assessment.

Nevertheless, data on process could be very

useful to the making of an individual program

plan, where it is necessary to identify not only

problems and possible objectives but also the most

appropriate means by which the objectives might

be met.

The traditional commitment to the collection

of replicable quantitative data has generally

limited data to that collected by professionals and

not usually from those people most directly and

frequently involved with the disabled person. The

search has been for objective data uncontaminated

by interaction between the person with disabilities and the examiner. This goal has limited the

value placed on data derived from more natural

settings and has limited the participation of

parents and disabled persons themselves in the

assessment process (75).

A recent, large-scale study, focusing on a range

of disabilities including developmental disabilities,

described the degree to which individualized planning procedures have been implemented in education (188). In a survey of 208 school districts

in 46 States, the study reviewed the individualized plans of about 2,500 students receiving special

education and related services in public schools

and an additional 550 students in special facilities.

Parents were found to have provided inputs to

the planning process in about one-half, and students in about 10 percent of the cases (188). Only

20 percent of the parents were thoroughly familiar

with the contents of the plan. Although there was

awareness of the child’s placement and the general

services being provided, parents were less familiar with the goals and the short term objectives

(188).

This low level of parental awareness of the objectives of the plans made for their own children

suggests that there may be considerable limits on

the degree to which parents can effectively participate in the implementation of the plans. A major resource in terms of parental support and cooperation may therefore be lost. Such cooperation is particularly crucial in the treatment of

children who are severely disabled.

The survey indicates that a more generic problem may exist in the entire planning process. The

relationship between identified problems and the

goals and objectives set was not well documented.

Such relationships were documented in respect to

language programs in a majority of cases. However, many of the plans did not have goal statements and objectives specified for identified needs.

Plans concerned with speech and mathematics

were complete in about one-half the cases. Areas

such as social adaptation, self-help skills, motor

skills, and vocational/prevocational skills, where

parental input and participation in implementation of programs might be most helpful, were

complete in less than 25 percent of the cases (188).

Although almost all plans surveyed contained information as to the services to be provided, the

lack of connection made between the service objectives and identified need brings into question

the effectiveness of the entire planning process in

determining appropriate services.

Determination of the Effectiveness

of Services Provided

The review of individualized program plans at

specified intervals is the third stage of the assessment process. In each of the areas being examined in this chapter—vocational rehabilitation,

developmental disabilities, and education—there

is a provision that, after the plan is made, the

degree of accomplishment of the objectives originally set must be evaluated and the plan accordingly revised for the next interim. The principle

of a cyclical procedure in which evaluation of the

effectiveness of services is an integral part of the

rehabilitation process has thus been established.

The provision for client involvement in the planning stage also extends to this evaluation stage.

This review and revision is a relatively new requirement for human service programs, and both

technical and conceptual issues arise in its

implementation.
38 ● Technology and Handicapped People

The vocational rehabilitation program will be

used as an example for the purposes of this analysis.

Measurement of client outcome in terms of

“case closure” by the attainment of employment

has been well established in vocational rehabilitation. The largely public source of funds for

vocational rehabilitation has mandated a commitment to accountability and statistical reports (86).

The use of outcome data from the IWRP is a more

recent phenomenon. A management information

system incorporating data from the IWRP is being developed (as of early 1982). The need for the

collection of data on a large scale for the evaluation of rehabilitation programs and rehabilitation

counselors has been one of the major incentives

behind the development of methods in this area.

However, the focus for discussion in this analysis

will be on the implications of evaluation methods

in respect to services provided for the individual

client.

Many of the methodological issues described

earlier concerning the identification of problem

areas and objectives for rehabilitation are also

directly applicable to the evaluation stage, Rating

scales descriptive of functional behaviors are used

as a posttest to measure changes in the client,

These rating scales must also meet the need for

a system of relatively specific indicators that reflect the wide range of possible settings for rehabilitation and the possible sequence of outcomes

within any one setting. They must permit agreement between observers as to outcome achieved.

The measurement of outcomes must also address

the issues inherent in the collection of data in

standardized test settings versus more naturalistic

ones and in the collection of data by professionals

versus those who are more directly consumers of

services. Just as in the determination of the initial plan, there must be awareness of the process

by which data are collected and the source of such

data (114).

Recent changes in the vocational rehabilitation

programs have mandated a commitment to dealing with “more severely disabled” people, and outcomes to be sought now include not only the ability to function within the work force but also to

live more independently. The “independent living” provisions of the Rehabilitation Act mark a

fundamental change in the character of the goals

of rehabilitation. A significantly different approach is required, because the principle of independent living does not necessarily imply that one

is free of the need for services, but rather that

those services are under the control of the disabled

person (45).

An expanded management information system

for vocational rehabilitation has been in the process of development over the past several years

(7,45). Within the past year, the character of this

projected system has been extensively modified

to incorporate scales measuring functional aspects

of clients, It is also planned that the system will

use life status indicators for measures of IWRP

goals and client changes. Plans to test this new

system, which was developed in close collaboration between RSA and State vocational rehabilitation agencies, are now underway. This section will

focus on this developing system as the expression

of present thinking on evaluation.

The movement away from the identification of

client problems in medical or psychiatric diagnostic categories of impairment has been well established in vocational rehabilitation. A number of

functional assessment measures have been developed, and two have gained particular acceptance

—the “functional assessment inventory” (FAI)

developed by a group at the University of Minnesota (43) and “rehabilitation indicators” (RI)

developed by a group at the Rehabilitation Institute at New York University (71,72). The goal of

both these measures has been to provide behavioral statements that are readily observable and

reliably measured by different observers. Both

measures, but particularly the RI, can be used to

provide descriptors of a range of goals and problems to be corrected and may then be used in the

evaluation of client changes. The focus in the FAI

is mainly on the characteristics of the client, rather

than the environment. Out of the 30 categories

of problems, only two have their locus outside

the individual. A new scale, not yet being used,

will describe “elements of the person’s physical,

social, cultural, and political environment that

may hinder or support goal attainment” (72).

The availability of these functional assessment

measures has led to the incorporation of items
Ch. 3—Assessing Disabilities and Planning Services . 39

— —

from both in the projected management information system for vocational rehabilitation on a national basis. “Life Status Indicators” from the RI

scale are to be used to reflect client characteristics at entry into the rehabilitation process and

at the completion of the service to assess change.

For example, one such status indicator relates to

self-care: a four-item scale ranges from “needs substantial assistance” through “occasional assistance” and “minimal assistance” to “needs no assistance. ”

Other measures of effectiveness of service relate

to the more traditional aspects of rehabilitation,

focusing on ability of clients to function in the

work force. These include increased economic independence in terms of employment at or above

the minimum wage, removal from public assistance rolls, and percentage competitively

employed.

The potential use of the IWRP as the primary

planning mechanism is recognized only to a limited degree. Measures that would evaluate the

contribution of the services actually provided in

accordance with the IWRP to any of the outcomes

are apparently not contemplated. Moreover, there

is no measure of the degree to which the client

has taken active part in the planning and evaluation process mandated by IWRP procedures.

The evaluation system for vocational rehabilitation has addressed the implications of the independent living movement only in part. There

has been attention given to measures other than

traditional ones related to employment, in recognition of the movement toward working with people with more severe disabilities. However, there

have not been substantial changes in how rehabilitation problems are viewed: The problems are

not yet widely seen as centered in the environment as well as in the disabled person. Even more

crucial to the independent living movement has

been the issue of the rehabilitation process itself

and active client involvement in decisionmaking.

This has not been addressed directly either in the

functional assessment scales or any of the other

data collection sources.

There is a critical need at this stage of the process for data not only on status but also as to the

means by which successful outcomes were

achieved:

Evaluation has traditionally been perceived as

an end point activity. The principle of assessment-planning-evaluation incorporated in the

IWRP process could more effectively be considered as an ongoing, cyclical process. Plans should

be revised in light of experience.

Evaluation has been traditionally perceived as

dealing with the measurement of outcomes alone.

The potential clearly exists, although rarely realized, to collect data as to what means were most

useful in bringing about whatever successful outcomes occurred.

Evaluation has traditionally been perceived as

separate from treatment. However, the assessment-planning-evaluation process may in itself be

a major and ongoing therapeutic activity, especially if focused on the means by which problems

have been solved.

If a major goal of rehabilitation is to encourage

the development of disabled persons to take control of their own lives, one skill to be engendered

and fostered is the ability of disabled persons to

plan for themselves. Thus, the abilities of disabled

persons to answer pertinent questions for themselves—about successes and the strategies for

achieving them, about problems to be encountered, and about goals and the means for realizing them—should be exploited and enhanced

(172).

TECHNICAL ADDENDUM TO CHAPTER 3

Individualized Written Rehabilitation vidual is developed jointly by the vocational

Program (Public Law 95-602) rehabilitation counselor . . . and the handicapped individual (or in appropriate cases his

[An] individualized written rehabilitation pro- parents or guardians) . . . Such written program

gram . . . in the case of each handicapped indi- shall set forth the terms and conditions, as well
40 ● Technology and Handicapped People

as the rights and remedies, under which goods

and services will be provided to the individual . . . Such program shall include . . . (I) a

statement of long-range rehabilitation goals for

the individual and intermediate rehabilitation objectives related to the attainment of such goals,

(2) a statement of the specific vocational rehabilitation services to be provided, (3) the projected data for the initiation and the anticipated

duration of each such service, (4) objective criteria and an evaluation procedure and schedule

for determining whether such objectives and

goals are being achieved . . . [Public Law

95-602: sec. 7(5), sec. 102(a)].

Individualized Habilitation Plan or

Habilitation Plan (Public Law 95-602)

(1) The plan shall be in writing.

(2) The plan shall be developed jointly by (A)

a representative or representatives of the program primarily responsible for delivering or established, (B) such person, and, (C) where appropriate, such person’s parents or guardian or

other representative.

(3) The plan shall contain a statement of 1ongterm habilitation goals for the person and the

intermediate habilitation objectives relating to

the attainment of such goals. Such objectives

shall be stated specifically and in sequence and

of progress. The plan shall (A) describe how the

objectives will be achieved and the barriers that

might interfere with the achievement of them,

(B) state objective criteria and an evaluation program and schedule for determining whether such

objectives and goals are being achieved . . .

(4) The plan shall contain a statement (in readily understandable form) of specific habilitation

services to be provided, shall identify such agency which will deliver such services, shall describe

the personnel (and their qualifications) necessary

for the provision of such services, and shall specify the date of the initiation of each service to

be provided and the anticipated duration of each

such service . . . (C) Each habilitation plan shall

be reviewed at least annually . . . In the course

of the review, each person and the person’s

parent or guardian or other representative shall

be given an opportunist y to review such plan and

to participate in its revision . . . [Public Law

95-602: sec. l12(b)].

Individualized Educational Program

(Public Law 94=142)

The individualized educational program for

each child must include: (a) A statement of the

child’s present levels of educational performance

(b) A statement of annual goals, including short

term instructional objectives; (c) A statement of

the specific special education and related services

to be provided to the child, and the extent to

which the child will be able to participate in

regular educational programs; (d) The projected

dates for initiation of services and the anticipated

duration of the services; and (e) Appropriate objective criteria and evaluation procedures and

schedules for determining, on at least an annual

basis, whether the short term instructional objectives are being achieved . . . [sec. 121a.346 of

the regulations implementing PubIic Law

94-142] .
4

Conclusions From Part One

It is not the hand but the understanding of a man that may be said to write.

—Miguel de Cervantes
Contents

Page

Definitions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 43

Numbers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 44

Planning and Evaluating Rehabilitation Services. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 45

●
4 ■

Conclusions From Part One

The purpose of Part

background information on

—

One is to provide handicaps. The numbers and specific types of limdisabilities and hand- itations on people’s functioning are, or should be,

icaps that places later material on technologies and a principal source of guidance for Federal and

on resource allocation in perspective. The need other programs that develop and diffuse technolfor technology and for the allocation of resources ogies and that expend funds for the use of techto develop and distribute them is, after all, derived nologies.

directly from the existence of disabilities and

DEFINITIONS

The three-tiered definition in chapter 2 of impairments, disabilities, and handicaps has significant implications for rehabilitation approaches

based on the application of technology. Because

it is the most objectively diagnosable condition

of the three, and because it is based on a physical

or mental loss or deficiency, an impairment is the

condition for which medical care is the most crucial and appropriate. Medical or surgical intervention is usually the first form of intervention applied in order to eliminate or reduce the impairment, to keep it from becoming a disability or to

keep the disability to a minimum.

As long as the impairment exists and is not fully

compensated for, however, a disability will also

exist. With disabilities, the role of medical care

is still important, but it will normally be supplemented by other interventions. Some of these will

be quite closely related to medical care, such as

training in the use of braces. Examples of other

types of services that become important include

attendant care, special education services, modified automobiles, environmental control systems,

and communications devices.

The objective of any technological application

is to eliminate, reduce, or bypass functional

limitations of the individual. When limitations

cannot be eliminated, a disability remains but it

may be prevented from handicapping the individual. A handicap, as defined in chapter 2, is the

result of interaction between a disability and the

social and physical environments of the disabled

person. A disability may change the way one accomplishes a task or reduce one’s ability to do it

at a certain level, but a handicap may prevent the

person from doing the task at all or at an aCCeptable level (to the person ). For example, a person

who uses a communication device that produces

artificial speech will speak in a different way from

nondisabled people, and that person may not be

able to speak as quickly or as expressively as is

“typical. ” The person may become handicapped

by that disability in combination with social expectations for conversational style and rate.

A person’s disability may change over time. For

example, physical and mental conditions improve

and deteriorate. The aging process carries with

it a gradual lessening of some functional abilities,

such as sight and hearing. New technologies are

developed or are acquired by the disabled person,

and these may change or influence abilities and

disabilities. Handicaps, too, can change. In fact,

the nature of handicaps implies that they can

change daily or even hourly, depending on

changes in the disability -environmental interaction. When a wheelchair fits through a doorway

and into an elevator, the disabled person has access and is not handicapped in relation to that

functional ability. An hour later, in the next

building, a doorway may create a handicap.

Having noted these properties of disabilities and

handicaps, OTA finds that accurate terminology

would involve using the phrases “a person with

a limitation on the ability to perform one or more

functional tasks because of an underlying condition, ” or “a person with a disability in one or more

43
44 ● Technology and Handicapped People

functions who is, in a particular situation, limited

in the ability to accomplish certain tasks. ” However, the terms “disabled person” and “handicapped person” are useful as a shorthand. In this

report, therefore, the terms disabled or handicapped person or individual should be read as implying the longer phrases.

The properties of disabilities and handicaps also

lead to several conclusions relating to Federal policies. Even though the role of medical care and

medical specialists may lessen in the progression

from impairments to disabilities to handicaps,

Federal policies are still primarily oriented to medical solutions. As will be covered in chapter 9,

a physician’s prescription is required for many devices and services not of a strictly medical nature.

Reimbursement under Federal health insurance

programs is not permitted to rehabilitation engineers. The criterion for inclusion in reimbursement appears to be less concerned with effect on

health or functioning than it does with affiliation

with a medical field.

Similarly, the properties of disabilities and

handicaps as defined here imply that the person

with those conditions could play a substantial role

in identifying needs for technologies, deciding to

acquire or use technologies, applying them, and

assessing their worth. This is not to say that the

disabled individual is the best judge of all aspects

of technology use. However, OTA finds that

often, more attention has been paid to the disability than to the person with the disability. Thus,

NUMBERS

OTA finds that “numbers” are a critical problem area. Aside from their use in debates about

the national costs or missed opportunities due to

disability, counts of the total number of disabled

people in the country are deceptive, ambiguous,

and, for most policy purposes, unnecessary. The

biggest need for the appropriate use of technology

and for the planning of governmental programs

is valid, reliable data on the numbers of people

with specific forms of functional limitations and

on the demographic characteristics of the people.

Such data do not exist in sufficient amounts to

greatly improve policymaking and the use of techmany opportunities for more informed and appropriate use of technologies may have been

missed. A source of expertise has been substantially overlooked. It may be that many researchers

are more interested in what they can do for disabled people than in what ways they can assist

disabled people in doing things for themselves,

or that many program administrators are more

interested in what their programs can do directly

than in what disabled people can do on their own,

given opportunity and some level of resources.

These possibilities cannot be investigated and

resolved fully, but the evidence available to OTA

indicates that they have some basis in fact.

Although the situation is changing somewhat,

many Federal policies and programs are oriented

to thinking of disability in terms of categories of

disease or diagnosis. This orientation of programs

is reinforced by the categorical organization of

most advocacy groups and other consumer

groups. One partial result of viewing disability

in categorical instead of broader functional terms

is the narrow focus and lack of coordination that

characterizes Federal efforts.

The categorical orientation may also result in

less than an adequate share of attention and resources being devoted to changing the environment within which disabled people function, or

to changing the way in which the disabled person interacts with the social and physical

environments.

nologies. Methodological weaknesses contribute

to the poor state of information, but increased attention and funds for the collection of data relevant to decisionmakers could be of tremendous

help. A concerted effort to improve data collection methods and systems is needed before large

sums of money should be spent on actual collection. This effort must include substantial participation by people with disabilities.

The above discussion should be seen in light

of the fact that existing statistics, especially those

on impairments or categorical conditions, usual-
Ch. 4—Cone/usions From Part One ● 45

—. —

ly were not designed to meet the now apparent

needs of policy makers and others. In addition,

data on impairments and other categorical information may still be needed for certain purposes

(e.g., planning the allocation of specific prevention services).

The goal of most public and private nonprofit

organizations should be to make their efforts less

and less necessary over time. They should work

toward the reduction of handicapping forces—

e.g., physical and attitudinal barriers to mobility

, transportation, employment, education, and

training. This perspective on the part of organizations should then lead them to identify,

generate, and disseminate data not only for their

own immediate, program-related uses but also for

the purposes of reducing barriers and involving

others in the effort, such as private firms. This

implies, for example, that the Social Security Administration may want to identify areas, and collect data about them, where the need for income

maintenance and health care resources could be

reduced due to the lessening of handicapping elements. Similarly, the National Institute of Handicapped Research could decide to include, to a

much greater extent than at present, the dat a

needs of manufacturers and marketers of disability-related products in the agency’s own designing of data collection efforts.

PLANNING AND EVALUATING REHABILITATION SERVICES

Before technologies to eliminate or reduce disabilities and handicaps can be appropriately applied to an individual, that individual must be

identified and an assessment made of the nature

and extent of the individual’s abilities and disabilities. Only then can services be planned, and

only in the context of that information can later

evaluation of outcome take place. Similarly, only

when the service and other technological needs

of a population have been assessed can informed

planning of resources be accomplished.

The processes in place to do this identifying,

planning, and evaluating, as discussed in chapter

3, suffer from various shortcomings. Their substantial, though not complete, reliance on categorical definitions of disabilities has been mentioned above. As the chapters of Part Two will

cover, the “need” for technology is most often

based on needs of disabled persons as perceived

by professionals or program administrators instead of on a blend of the disabled person needs,

desires, and capabilities, as identified with the full

participation of the disabled person or a representative. This situation not only detracts from

the process of applying individual technologies

but also makes it more difficult to allocate resources at individual, programmatic, and societal

levels.

There is great potential for improving this situation through the use of the individualized plans

required under programs for education, developmental disability, and vocational rehabilitation.

Techniques for creating and carrying out such

plans do not, however, appear to be well developed. Nor does adequate effective effort seem to

be devoted to making those planning opportunities work.

At the Federal level, OTA finds an apparent

lack of attention, and a definite lack of significant funding, given to the use of management information systems based on data from individualized plans. Such information systems could be

used to generate data that could be used in planning, evaluating, and modifying programs.
Part Two:

Technology
5 ■

Technology and Its

Appropriate Application

Man is a tool-using animal . . . Without tools he is nothing, with tools he is all.

—Thomas Car/y/e
Contents

Page

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 51

Technologies and Disabled People . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 51

Appropriate Application of Technology . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 52

Some Suggested Elements To Structure Framework . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 54

Specifying the Decision Perspective . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 54

Specifying the Range of Relevant Decisionmakers. ... . . . . . . . . . . . . . . . . . . . . . . 54

Explicitly Stating the Goals for the Use of Technology. . . . . . . . . . . . . . . . . . . . . . . . . . . 55

Specifying Needs, Desires, and Capabilities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 55

Identifying the Full Range of Possible Technological Options. . . . . . . . . . . . . . . . . . . . . 55

Identifying and Analyzing Characteristics of Technologies. . . . . . . . . . . . . . . . . . . . . . . . 55
59

Technology and Its

Appropriate Application

INTRODUCTION

Policies in the disability area must take into account large numbers of technological possibilities,

organizational factors, resource allocation demands, and competing levels of decisionmaking.

OTA finds that an approach that helps to structure analysis and decisionmaking is needed to

fulfill the goal of matching the technology needs

of disabled people with the ability to develop and

deliver the needed technology. The idea of matching technologies to users and to delivery capabilities is one of the two principles that guided the

OTA study. A concept of “appropriate technology“* is one of the necessary conceptual bases for

an examination of policies related to technology

and disabled people.

‘It I\ ]mportant (() remember that, as the text of this chapter points

(~{]t, OTA uses the term ‘‘approprva te technol Ogv ” to reter t ()

t(,( hno]ogl,” that Ij ~~~ve]ope~ or dddpted in re~ponw> t () the needs,

desl rt,i, arid cdpab] 1 I t ies of dI sabled people and a;)~~ll~,li i~)~;jr ( ~~ ~r iutclv Thl> concept ~houlci not be c ont uwd w]th the ‘\mall i s

TECHNOLOGIES AND DISABLED

Technology in its broadest sense is the application of an organized body of knowledge to practical purposes. This definition encompasses physical objects, such as wheelchairs or subway elevators, and also processes, such as vocational rehabilitation or reimbursement systems—in short,

a tremendously varied and complex collection of

society’s tools. A full study of “technology and

disabled people” would in effect be a study covering nearly all issues related to disabilities and

handicaps, an impossible task. For the purposes

of this study, OTA accepts the broad definition

of technology as valid, but primarily will focus

on technologies designed for and used by individuals with the intent of eliminating, ameliorating,

or compensating for (bypassing) one or more

The second principle is one of matching decisionmakers’ resource capabilities to their allocation goals. Despite the many problems associated

with the processes of developing technologies for

disabled persons, a perhaps more critical problem

lies in the reaction of society and its institutions

to existing technological capabilities. This country’s ability, imperfect as it is, to deliver technologies is running ahead of decisions about what

ends society seeks through technology, about who

shall receive technologies that already exist, and

about how those technologies will be provided

and financed.

beautiful” intermediate technology movement, although there .]rt,

important similarities. “Appropriate technology, ” to OTA, ma, I>,

complex or simple, expensive or i nexpen 51 ~’[, t<lscina ting or mun -

dane appearing. The key is whether it mclt( he~ the situation of use.

PEOPLE

functional limitations of individuals as opposed

to populations. Elevators in subway systems, for

example, are not designed to address the needs

of specific individuals but instead are oriented to

“populations. ” Thus, this study focuses on what

are sometimes called personal assist (or assistive)

devices and services.

Drugs and medical devices are clearly within

this study’s boundaries. So, too, are Autocom

communications devices, modifications of automobiles and vans, employment technologies (including training and skills counseling), and special

typewriters. The working definition, however,

eliminates or reduces in emphasis technologies

designed to address population-oriented needs.

51
52 ž Technology and Handicapped People

Examples of such technologies are transfuses,

transportation systems, education systems as a

whole, or systems of providing rehabilitative

therapy.

This leaves a set of technologies in the middle–

those that are established and operated for groups

of disabled people and yet are oriented to individuals. An example of this form of technology

is “sheltered employ merit.” Other examples are

education programs designed to provide appropriate educations to individuals (as opposed to entire systems of education, as noted above), vocational counseling programs, and centers for independent living. There was no clear-cut way to

decide whether to include such technologies.

Therefore, technologies of this sort were considered individually and in most cases were included in at least the research phases of this study.

The three classes of technologies for disabled

individuals presented above form one possible

taxonomy or method of classifying technologies.

Others, however, are also necessary. One method

is to classify technologies by their broad goals.

OTA used the following scheme:

● communication ●

● sensory input ●

● mobility

● manipulation (of ●

objects)

education

security (physical,

psychological)

health (medical

care)

●

●

●

employment (for

activity, satisfaction, livelihood)

social interaction,

recreation

daily living (e.g.,

shelter)

The items on the left are more basic goals; those

on the right are broader goals, One way to view

technology is as a method of enhancing the ability goals on the left in order to accomplish goals

on the right.

The usefulness of a taxonomy lies in its ability

to guide the development of further sets of goals

for the development and evaluation of technologies. If one knows the human need that a technology is designed to address, one has identified

the broad goal of the technology. The subsequent

process is one of refining the statements of functional goals of the technology to arrive at outcome measures that can be used for development

and e.~aluation. Wheelchairs are obviously intended to fulfill the primary need for mobility.

An evaluation of wheelchairs, however, should

be based on criteria that take into account the secondary functions for which mobility is necessary.

For example, reliability of wheelchairs and ease

of service are important evaluation criteria when

travel to and use in employment is viewed as one

of that technology’s functions.

APPROPRIATE APPLICATION OF TECHNOLOGY

By using the terms “appropriate technology”

or “appropriate application of technology, ” OTA

is not necessarily referring to the “intermediate

technology” or “light capital technology” movements, although the background of those movements has many elements in common with the

OTA use of the term. Appropriate application

does not require that a technology be simple or

that it be inexpensive, only that it be suitable for

the intended effects and that it take into account

any constraints, such as the resources available.

Appropriate technological use for even a single

individual may span the full range of cost and

complexity possibilities. For example, one person

might need a complex, $3,OOO microcomputerbased, voice-synthesizing communications device;

a $3OO manual wheelchair; attendant care for certain periods of the day; and relatively simple and

inexpensive aids such as special eating utensils and

a pole with a “velcro” attachment for retrieving

fallen keys from the floor.

Appropriateness cannot be defined until and

unless its context is specified. That context will

always involve value, as well as technical, considerations. Thus, a technology may be considered appropriate when its application is: 1 ) in reaction to or in anticipation of defined goals relating

to problems or opportunities, 2) compatible with
constraints, including resource constraints, and

3) results in desirable and sufficient outcomes with

acceptable negative consequences or risks to parties at interest.

There are, logically enough, degrees of appropriateness. The most appropriate technology in

a given situation is one that provides the greatest

ratio of desirable outcomes to negative effects and

resources consumed, providing that outcomes and

consequences have been defined and are of sufficient value as judged by appropriate parties at

interest.

“Appropriate parties at interest” introduces an

involved concept, one that is extremely sensitive

as well. An “appropriate party at interest” is one

who has a stake in the development and use (especially as regards outcomes) of technologies for

people with disabilities. The primary party is the

disabled individual or population. But the relevant set of parties will vary from situation to situation. Disabled individuals affect or define the

appropriateness of technology not only by their

judgments of outcomes, but also by their judgments on the worth of those outcomes in relation

to resources required (especially when they will

personally allocate those resources).

Other parties at interest include parents and

family members; physicians and other health professionals, vocational counselors, biomedical researchers, electronics scientists, and other R&D

people; the public at large; governmental and private policy makers; voluntary health and social

organizations; industry; school systems; insurance

companies; and many other groups. All these people and groups provide definitions of “appropriate” from their perspectives. It is their values and

goals that give meaning to the appropriate application of technology.

Attention to the concept of appropriate technology and the attendant role of parties at interest

serves to put policies regarding the development,

evaluation, diffusion, and use of technologies into

perspective. One line of reasoning, for example,

is that a technology should not be developed simply because a researcher finds it a fascinating challenge. Although this argument is a strong one, it

ignores the many substantial contributions made

by research that was seen as unrelated to its evenCh. 5— Technology and Its Appropriate App//cat/on “ 53

tual uses. Thus, the difficult but necessary approach is placing policy decisions into perspective

—trying to find an appropriate balance between

practical directed research and research with a less

visible connection to near-term applications. Nor,

for example, should society expect disabled persons to use a technology that is not compatible

with their needs, desires, and capabilities.

The expansion of an appropriate technology approach from a concept to a framework that can

be used to analyze questions of legislative and

regulatory policy, resource allocation, and general

decisionmaking will be a difficult and frustrating

task. Such an approach, however, holds great

promise for the goal of developing a more coherent and efficient set of policies, especially in an

era of increasingly constrained resources.

It is possible to state some of the critical elements that will have to be taken into account.

That is, some of the elements that can be used to

structure decisionmaking or analysis can be sug

-

gested. Paramount among these is the forced, explicit identification of parties at interest, positive

and negative outcomes relevant to each such party, resources needed or consumed, conflicts

among parties at interest in terms of desirability

of various outcomes, methods of compromise or

reconciliation between the various parties, and the

differing motives and goals of the parties.

The development of methods for assuring appropriate development and use of technologies implies the importance of a coordinated and coherent system for:

●

●

●

●

●

●

●

involving the potential users and their associates in all the steps possible—from identification of needs, to design of the technology, to evaluation of the resulting technology;

identifying functional limitations of potential users;

identifying individuals with limitations;

identifying the need for technological aids to

eliminate or reduce limitations;

specifying the goals sought for technology

before design begins;

identifying existing technologies that may

provide such aid;

conceiving, designing, and developing new
54 ● Technology and Handicapped People

●

●

●

●

●

technologies or modifications in existing technologies to provide such aid;

conceiving, designing, and developing the

necessary training programs, support services, financial services, and information dissemination services to allow the appropriate

use of any such technologies;

being aware of attitudes and values that facilitate or hinder the application of technologies;

being aware of statutes or regulations, or

needed changes in statutes or regulations,

that will affect the success of the application

of the technologies;

eliminating or reducing marketing, especially

financial, hindrances to successful application of the technologies;

evaluating, prospectively to the maximum

extent feasible, the safety, efficacy, sufficiency, quality, costs and other implications of

the technologies;

●

●

●

If

considering the application of any such technologies in relation to the many other types

of technologies to be used by the individuals

and the range of life functions to be performed;

conducting followup evaluations to determine: 1) actual v. predicted performance and

benefit of the technologies, and 2) whether

any modifications or adjustments are needed

to better match the goals; and

sharing successful efforts with other potential users of the technologies.

such a framework can be developed (and it

need not be a quantitative one; identification of

critical factors and subsequent qualitative analysis

may be sufficient for many aspects of decisions),

then analysis of costs and benefits can be better

accomplished at the varying levels of the individual, program, and society.

SOME SUGGESTED ELEMENTS TO STRUCTURE A FRAMEWORK

The key to appropriate application of technologies lies in finding a fit, which will always involve tradeoffs, between: 1) the needs, desires,

and capabilities of users and other relevant parties, and 2) the costs, risks, and benefits of technologies. Based on the conceptual and system factors presented above, this section lists factors that

might be part of a policy approach to increasing

the appropriateness of technologies. The information to be presented is not intended to be a definitive analytical framework. Instead, it is intended

to provide examples of the types of considerations

that would have to be used in the structuring of

any such analytical approach, Also, it is important to remember that no framework is a solution; it will at the most be an organized method

of structuring policy and technological problems

and decision processes.

Specifying the Decision Perspective

Analysts, those supporting or funding the analysis, and decisionmakers must decide clearly the

perspective from which the analysis is to be done

—i.e., the decision to be made might be an individual one, a program-oriented one (e. g., Medicare), a geographic or regional one, or a societal

one, If the decision and analytical perspectives are

societal but not concerned with specific technological applications, a resource allocation framework, as discussed in chapter 11, would also be

very important, Specifying the decision perspective is necessary before decisions can be made

about the range of costs, risks, and benefits to be

considered in the analysis. It also affects the relative weight to be given to the various parties at

interest,

Specifying the Range of Relevant

Decision makers

This step also influences the analytical focus.

It is particularly critical when a societal perspective is to be used, Even when an individual perspective is relevant, however, the task is difficult.

Besides the individual directly involved, there may

be other important decisionmakers: parents,

counselors, physicians, insurance companies,

teachers, social workers, and so on. The follow-
Ch. 5— Technology and Its Appropriate Application ● 55

ing steps should be examined from the viewpoint

of each of the relevant decisionmakers.

Explicitly Stating the Goals for the

Use of Technology

What are the goals and objectives of each of

the parties affected by these decisions? These must

be stated explicitly because they will very often

be different, usually competing, depending on the

relevant party. Successful tradeoffs can only be

made when there is an open admission and examination of conflicting desires with regard to the

technology’s application. For each goal: How was

it set? Based on what information or data? What

is the quality of such information? When goals

are based on different data about the problem to

be addressed, the desired objectives to move toward, and the interventions that will bring about

such movement—and when goals of various relevant parties are in conflict—what is the relative

quality of the different data? And how can differences in data be reduced or eliminated? When

information gaps are present, how can the needed

information be collected or acquired? Who will

do so, in what ways, and with what support or

funding? Are goals and progress toward them

measurable? Will the evaluation information be

in a form that will allow modifications in the interventions being used? Who will monitor progress and be responsible for reporting it to relevant

parties?

Specifying Needs, Desires,

and Capabilities

This step primarily applies to the direct party

at interest—the disabled individual or discrete

population. The need for a technological intervention must be assessed. The disabled person must

either specify the need or be extensively consulted

in its specification. Need should be expressed in

terms of minimal functional levels required to perform tasks—the “threshold” standard. In addition,

however, the desires (goals, aspirations) of the

parties must be taken into account, as should the

capabilities of the parties to effectively and efficiently use the intervention. Whereas it is most

common to specify the need for a technology

based on a problem definition, this step assumes

that a blend of needs, desires, and capabilities

must be explicitly identified, The needs, desires,

and capabilities of other relevant parties besides

the disabled individual or population must also

be considered. (An example is the case of teachers

who must implement provisions of the Education

for All Handicapped Children Act. )

Identifying the Full Range of

Possible Technological Options

An attempt should be made in this step—at

least at first—to identify as broad a range of technological options as feasible. Information on possible technological applications should be combined with information based on goals and on

needs, desires, and capabilities. This step involves

consulting with other disabled individuals, identifying technologies used in the past, and obtaining information from professional sources, data

banks (ABLEDATA, etc.), advocacy groups,

Government agencies, trade journals and newsletters, manufacturers, etc.

Identifying and Analyzing

Characteristics of Technologies

For each of the technologies considered to be

potential interventions, the following types of

information should be analyzed.

●

●

●

●

●

●

●

●

●

its availability;

its simplicity of operation;

its initial cost, including installation if applicable;

its reimbursement or financing status;

its future adaptability (add-ens, cost, flexibility);

its repair record (including ease and time);

the extent and quality of performance or

evaluation data;

its cost of operation, if any; and

its ability to provide desired functions to the

necessary level.

These are examples of characteristics; others

certainly can be added to the list. For each technology, the traits above should be compared to

the following characteristics of the potential users

and their needs, desires, and capabilities. Again

the list is illustrative, not exhaustive.
56 ● Technology and Handicapped People

—

●

●

●

●

●

●

●

●

●

●

●

●

the functional limitations of the user.

the physical and mental capabilities of the

user to apply the technology;

the user’s affinity or preference for the various types of technology (e. g., computers, or

power assists);

the user’s desire for independence;

age, sex, and other demographic characteristics of the user;

the physical location of the user—geographic and environmental;

type of transportation services available;

the occupation or potential occupations of

the user;

the vocational and avocational aspirations

of the user;

income or other funds available;

any ways in which the above characteristics

might change over time; and

the specific performance level requirements

of the activity/environment in which the individual will be involved.

The discussion above has focused on the individual. No matter what the decision and analytical perspectives are, the need for the information

above will still usually apply. If the decision perspective is other than the individual’s, however,

the information outlined above may have to be

supplemented by similar information on the characteristics of the new decisionmaker. Information

on desires and resources available will be especially critical.

Selection of the technological intervention to

be applied can then be based, in part, on completing the above steps for each technological possibility. “In part” is highlighted because decisions

will rarely if ever be based entirely on the results

of analysis, no matter how informed or structured

the process of analysis and decisionmaking has

been. Structure informs, and ideally improves, the

decision; it does not and should not make the

decision.
6

Research and Development;

Indeed, what is there that does not appear marvelous when it comes to

our knowledge for the first time? How many things, too, are looked upon as

quite impossible until they have been actually effected?

—Pliny the Elder

‘93-538 O - 82 - 5 : QL 3
Contents

Page

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 59

Current Activities and Programs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 59

The Federal Role in R&D. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 59

Funding Levels of Disability-Related R&D. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 59

The Federal Government’s Involvement in Disability-Related R&D. . . . . . . . . . . . . . 60

National Institute of Handicapped Research . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 62

Veterans Administration. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 64

Other Federal Agencies. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 65

The Private Sector Rolein Disability-Related Research. . . . . . . . . . . . . . . . . . . . . . . . . . . 68

Discussion. ..,....,,. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 70

LIST OF TABLES

Table No. Page

I. Science Information Exchange Grants Awarded for Disability-Related Research by

Federal Agencies, Fiscal Year 1979. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 60

2. National Funding for Health R&D, 1980. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 61

3. Veterans Administration RER&D Budget Distribution . . . . . . . . . . . . . . . . . . . . . . . . . . . . 65

4. Veterans Administration R&D Budget Overview . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 65

S. National Health Agencies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 68

LIST OF FIGURES

Figure No. Page

2. A Comparison of Public and Private Expenditures for Health Care, Transfer

Payments to Disabled People, Health Care Research, and Disability-Related

Research, Fiscal Year 1979. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 61

3. NIHR Grant Allocations by Program, Fiscal Year 1979. . . . . . . . . . . . . . . . . . . . . . . . . . 63

4. NASA’s Technology Transfer Process . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 67
Research and Development

.

INTRODUCTION

“Research, development, and diffusion” is a

shorthand phrase for a diverse and complex process of creating, producing, and delivering technologies. The research and development (R&D)

system is an intricate arrangement of public and

private organizations. These include Federal,

State, and local governments; individuals; companies; universities; and a host of other participants.

The research, development, and diffusion of

technologies for disabled people covers an extremely broad range of conditions. The National

Institute of Handicapped Research (NIHR), for example, includes the following in its research plan:

mental retardation, mental illness, and physical

disabilities—i. e., paraplegia, arthritis, sensory

deficits (blind, deaf, deaf-blind), epilepsy, heart

disease, cancer, stroke, amputations, multiple

sclerosis, cerebral palsy, muscular dystrophy, osteogenesis imperfect, spina bifida, cystic fibrosis,

chronic respiratory dysfunction, specific learning

disabilities, and many other categories (52).

Each of these conditions alone could easily consume a major part of the research attention of the

agencies involved in this area. The research task

is further complicated by the varying severity of

disabilities present in the population. Between the

individuals of near “typical” functioning and those

with extremely severe disabilities are the majority who require widely varying amounts of assistance, either social or technological, to perform

various life functions.

Furthermore, there are thousands of specialized

technologies to assist disabled individuals. Such

technologies range in complexity from $25,000

computerized reading machines for blind people

to $3 specially designed utensils for easier gripping. In addition to devices for the individual,

technologies include “system” technologies that

make public transportation, buildings, and communication networks more easily accessible.

“Service” or process technologies are equally

diverse. Programs to assist disabled people include

rehabilitation therapy provided by health care organizations, job counseling, sheltered workshops,

independent living centers, traditional medical

care, income assistance, and a number of other

services. Disability-related research encompasses

all of these diverse and interlocking technologies,

CURRENT

The Federal

ACTIVITIES

Role in R&D

AND PROGRAMS

ducted by Richard LeClair of NIHR estimates the

Funding Levels of Disability-Related R&D

amount spent in fiscal year 1979 to be about $66

million (126). A breakdown of the survey and the

The amount of funds devoted to R&D in the

disability area is quite small in comparison to the

number of people affected, the complexity of the

research problems involved, and the total health

care R&D budget. A recent White House study

estimated that approximately $40 million to $50

million was spent annually by Government agencies responsible for various forms of disabilityrelated research (181 ). A more current survey conagencies involved is presented in table- 1.

An important addition to the research more traditionally thought of as disability related is the

general research of the National Institutes of

Health (NIH). Much of NIH’s research aims at

preventing, treating, or diagnosing the diseases

and conditions that directly or indirectly contribute to disabilities. The expenditures and resource

allocations of NIH—especially those of the Na5 9
60 . Technology and Handicapped People —

Table 1 .—Science Information Exchange Grants Awarded for Disability-Related Research

by Federal Agencies, Fiscal Year 1979

Vocational/

educationaI

- . . . .- —. - --- --- Oflice of special education. .

Veterans Administration. ...

National Institutes of Health .,

Department of Commerce,

National Institute of Handicapped Research . . . . . . . .

National Science Foundation .

Department of Defense ,

Department of Agriculture ., . .

Bureau of Occupational and

Adult Education .

Department of Labor .

Social Security

Administration . . . . . . . . . . . .

Health Care and Financing

Administration . . . . . . ...

Department of Transportation

Smithsonian Institution .,

Department of Justice. . . . .

Department of Housing and

Urban Development. ...

Totals . . .

$4,255,550

—

50,000—

1,532,358—

—

50,000

540,049

50,000

—

—

—

—

—

—

$6,487,957

Management/ Physical

service restoration Behavioral/ Rehabilitation

delivery (medical) social engineering

$ 1,949,207 $ 2.551.99 3

400,000

321,404

—

9,346,536

59,000

—

50,000

—

100.000

100,000

—

300,000

50,000

246,580

—

1 ,550; 000

7,660,022—

7,976,239

$1,071,609

750,000

3,024,373—

3,879,114

50,000

— —

37,436

$ 781,372

3,886,011

1,039,165

160,000

9,465,753

1,941,000

183,331

—

.

—

—

38,000

238,037

—

—

500,000

$12,922,727 $19,288,254 $8,762,532 $18,232,669

Total

$10,619,731

6,586.011

12,094,964

160,000

31,700,000

2,000,000

183,331

100,000

540,049

200,000

100,000

75,436

538,037

50,000

246,580

500,000

$65,694,139

NOTE These figures are wlthln 10 to 20 percent of the actual expenditure levels Differences in deflnltlons, account Ing procedures, etc al I con t r[ but e 10 varlat ions I n

estimates

SOURCE. Richard LeClalr, National Institute of Handicapped Research

tional Institute of Arthritis, Diabetes, and Digestive and Kidney Diseases; the National Eye Institute; the National Institute of Neurological and

Communicative Disorders and Stroke (NINCDS);

the National Institute of Child Health and Human

Development; and the National Institute on Aging

—and of the Alcohol, Drug Abuse, and Mental

Health Administration within the Department of

Health and Human Services (DHHS) all play a

role in research aimed at lessening the incidence

and severity of physical and mental conditions

present in the population as a whole and in the

population of disabled individuals specifically.

Even if a more inclusive definition of disabilityrelated research is used, the total Federal level of

involvement is still rather small compared to

health care expenditures in general, health care

research efforts, and money spent on transfer programs for disabled people. Figure 2 and table 2

illustrate these comparisons. Note that if figure

2 were drawn to scale, the amount for disabilityrelated research could not even be seen.

The Federal Government is responsible for an

estimated 66 percent of all health research in this

country (163). As a result, the Federal Government is the major force in setting research priorities for health care research in general and also

for disability-related research. The figure and

tables mentioned above help provide an overview

of the Federal R&D effort and the complex network in which biomedical, health care, and disability-related research exist. They also provide

an indication of the general direction the Federal

Government has established for the national research effort.

The Federal Government’s Involvement

in Disability-Related R&D

The official role of the Federal Government in

vocational rehabilitation, prosthesis research, and

other disability-related research dates back to the

1930’s and 1940’s. The presence of the Federal

Government as a purchaser of devices to aid disabled people reaches back even further to the

years following the Civil War (210). Much of the

groundwork for the current system of rehabilitation research was laid in the 1940’s by the National

Academy of Sciences and the armed services in
Ch. 6—Research and Development . 61

Figure 2.—A Comparison of Public and Private

Expenditures for Health Care, Transfer Payments to

Disabled People, Health Care Research, and

Disability-Related Research, Fiscal Year 1979

$212.2

40-50%.

of total

Figures In billions of

dolIars

Private —

Public —

(Not drawn to scale)

?

$35.6 ?

?

$7.1

Total health Transfer Health care Disability.

care expenditures payments to research related

(public and disabled research

private) people

SOURCE Office of Technology Assessment

response to the postwar needs of veterans. A large

share of the initial research was conducted by the

Department of Defense (DOD) and the Veterans

Administration (VA) on prosthetic devices. Prosthetics research, along with an expanded focus on

other areas of disability-related research, still continues in the VA system. The present day Rehabilitation Services Administration (RSA) had its

beginning as the Office of Vocational Rehabilitation within the then Department of Health, Education, and Welfare (DHEW) in the early 1950’s

(210). Since these early efforts, the range and

depth of the Federal initiative have expanded

markedly. In addition, this area of R&D has

steadily gained increased attention and recognition by the Federal Government over the years,

though it remains small in comparison to the imTable 2.— National Funding for Health R&D, 1980

(millions of dollars)

Total funding . . . . . . . . . . . . . . . . . . . . . . . $7,891’

Government:

Federal . . . . . . . . . . . . . . . . . . . . . . . . 4,723

State and local . . . . . . . . . . . . . . . . . 455

Industry . . . . . . . . . . . . . . . . . . . . . . . . . 2,391 b

Nonprofit organizations . . . . . . . . . . . . 322b

alnClu&~ expenditures for drug r~search

b Estimates

SOURCE Office of Program Plannlng and Evaluation. National Ins!(tutes of

Health

mensity of the problems involved. The private

and nonprofit sectors of our society have also

become increasingly involved in disability-related

products and services. These two areas are examined more closely later in this chapter.

Earlier, in table 1, Federal spending levels were

used to illustrate the level of Government involvement in disability-related research. * Naturall y

enough, levels of spending correlate very closely

with levels of involvement and commitment to

research. With research budgets as the measur--

ing stick, four organizations stand out prominently: the Office of Special Education (OSE), VA,

NIH, and NIHR. The National Aeronautics and

Space Administration (NASA) is also involved in

this area as a result of technology transfer efforts

stemming from its primary aeronautical and space

mission.

The Interagency Committee for Handicapped

Research is responsible for reviewing proposed

research projects and for identifying areas that

overlap with ongoing projects. The committee

must include the Director of NIHR and representatives from RSA, NASA, NIH, the Department

● There is a lack of consistent definitions for the terms rehabilitation research, handicap-related research, biomedical research ap

-

plied to the disabled, and similar terms. Each term means something

different to different people, and they carry different connotations

and emotional undertones. Often, definitions of research in this area

primarily include the rehabilitation engineering efforts (hardware-oriented) efforts of the VA, NIHR, NASA, and NSF. Other definitions

expand the hardware orientation and include the services and methods efforts of various organizations; for example, OSE or NIHR’s

research training centers. Still others include the biomedically

focused efforts of NIH, or the "systems” research of the DOT and

so on, A large number of agencies and organizations do some amount

of research, most of which is narrowly focused in rather specialized areas. These efforts are included in some definitions and excluded from other.
62 ● Technology and Handicapped People

of Transportation (DOT), the National Science

Foundation (NSF), VA, and the Department of

Education (DOE). A member of the National

Council on the Handicapped also sits on the committee. Representatives from the nonprofit and

private sectors are also included.

Another mechanism that NIHR and other Federal agencies involved in this area use is the Interagency Committee on Rehabilitation Engineering. This working group, composed of representatives from NSF, the National Council, the National Bureau of Standards (NBS), NASA, VA,

NIHR, the Department of Housing and Urban Development, DHHS, DOT, NINCDS, and the

Senate Committee on Labor and Human Resources, has been meeting for the last 5 years. It

was instrumental in the development of NIHR’s

Long-Range Plan.

National Institute of Handicapped Research.—

NIHR, a major source of disability-related

research funds, is an “old” program with a new

name and a new location. The Rehabilitation,

Comprehensive Services, and Developmental Disabilities Amendments of 1978 (Public Law 95-602)

removed the engineering and training programs

previously administrated by RSA in DHEW and

placed them, as NIHR, in the newly reorganized

DOE under the Office of Special Education and

Rehabilitative Services, along with the restructured RSA.

NIHR was a response to a need for a centralized and more visible focus on rehabilitation

research and engineering. The agency was given

the mandate to establish a comprehensive and coordinated approach to the development of a rehabilitation research program. It was also charged

with facilitating the dissemination of information

concerning developments in rehabilitation procedures and devices to professionals and disabled

individuals. In addition, NIHR was directed to

help improve the development and distribution

of technologies to disabled people and to increase

the scientific and technical base currently existing

in the area (10).

NIHR has an extensive mandate considering its

size and funding levels. Its fiscal year 1981 budget

is $35 million. Its closest competitors for research

funding are NIH, OSE, and VA, all of which have

smaller research budgets directed toward disability-related research.

NIHR has developed a number of mechanisms

to implement its congressional mandates. To approach the critical research issues confronting

disabled people, it has developed a three-step

process (52): 1) identification and establishment

of priorities for research programs for the application of technology to the needs of disabled individuals; 2) development of the technologies that

have been identified; and 3) evaluation, verification, and demonstration of the research results

and the dissemination of information and technology to the rehabilitation practitioners.

From this process, NIHR has developed a research plan that it has stated in terms of categories

of “needs.” Each of the general areas of need is

further subdivided by functional categories and

then once again divided by disability group. These

categories are also examined and divided according to age categories, severity of disability, and

so on. The general functional areas of research

needs, with specific examples, that NIHR has identified are the following (52):

●

●

●

●

●

•

●

Mobility: locomotion, wheelchairs, personal

licensed vehicles, and public transit.

Housing: accessibility (architectural barrier

removal), and appropriate fixtures and furniture.

Communication: reception and expression of

information (interpersonal communications

in person and through telecommunication

and access to stored information).

Function/physical restoration: orthotics,

prosthetics, functional electrical stimulation,

tissue mechanisms (e.g., pressure on tissue),

biomechanics (joint replacement), surgical

procedures and equipment (therapeutic), sensory stimulation substitutes, and diagnostics.

Education: specialized equipment (equipment

for delivery of services for diagnostics, and

for therapeutics).

Employment: job station adaption, job modification, specialized equipment, and physical

adaption for work.

Recreation/physical education: specialized

equipment.
Ch. 6—Research and Development ● 63

• Activities of daily living: environmental control systems, medical self-care (monitoring

of one’s condition and progress), feeding and

hygiene devices.

NIHR translates these research goals and needs

into practice via: 1) rehabilitation research and

training centers (RTCs), 2) rehabilitation engineering centers (RECs), 3) spinal cord injury rehabilitation centers, 4) centers for deaf-blind youths, and

5) coordination with the international rehabilitation research centers (55). A breakdown of the

budget levels and grant allocations that NIHR

devotes to these various areas is shown in figure 3.

The RECs grew out of the major research and

training programs in prosthetics and orthotics at

RSA and its predecessor agencies. The REC approach was initiated in the early 1970’s and was

designed to encourage the application of technology to improve the quality of life of physically

disabled people. This goal was to be reached by

Figure 3.— NIHR Grant Allocations

Fiscal Year 1979

Discrete

grants

(24 percent)

by Program,

RRRI

(2 percent)

INT’L

(4 percent)

REC

(21 percent) .

 RT C

(47 percent)

NARIC’ \

(O 3 percent) RUL (1.5 percent)

Key

INT’L — International centers and programs

NARIC — National Rehabllltatlon Information Center

REC — Research engineering centers

RRRI — Regional rehabi(ltation research Institutes

RTC — Research and training centers

RUL — Research utilization laboratories

SOURCE NIHR research and demonstration grants awarded [n fiscal year

1979

combining medicine, engineering, and related

sciences to form a coherent and total rehabilitation

effort (51). Since 1971, 12 RECs have been established in the United States, with three additional

collaborating centers overseas. Each center has its

own research agenda, developed within the general context of NIHR’s long-range research plan.

NIHR also funds a number of other centers that

address a range of disability-related issues. Among

these are 21 RTCs: 11 medical RTCs, three mental retardation rehabilitation RTCs, three vocational rehabilitation RTCs, two deafness rehabilitation RTCs, a blindness rehabilitation RTC, and

a mental health rehabilitation RTC. These centers

pursue research that deals with problems pertaining to employment, living skills, rehabilitation

personnel training programs, discrimination, service delivery models, consumer involvement, etc.

In addition to supporting research on the topics

just mentioned, RTCs have responsibility for conducting training programs for rehabilitation and

health care professionals.

The legislation that created NIHR also established a formal mechanism for setting research priorities and for coordinating activities among the

various agencies that support disability-related

research. The 15-member National Council on the

Handicapped, for example, is to perform the following tasks (10):

●

●

●

●

●

establish general policies for, and review the

operation of, NIHR;

provide advice to the Commissioner with respect to the policies and conduct of RSA;

advise the Commissioner, the appropriate

Assistant Secretary, and the Director of

NIHR on development of programs to be

carried out under the Rehabilitation Act, as

amended;

review and evaluate on a continuing basis

all policies, programs, and activities

concerning disabled individuals and persons

with developmental disabilities conducted

or assisted by Federal departments and agencies in order to assess their effectiveness in

meeting needs;

make recommendations to the Secretary, the

Commissioner, and the Director of NIHR

respecting ways to improve research
64 . Technology and Handicapped People

●

concerning disabled individuals, and the

methods of collecting and disseminating the

findings of such research and to make

recommendations for facilitating the implementation of programs based on such

findings; and

submit annually a report to the Secretary,

Congress, and the President containing:

a) a statement of the current status of

research concerning disabilities in the United

States; b) a review of the activities of RSA

and NIHR; and c) such recommendations

concerning (a) and (b) as the council considers appropriate.

Since the National Council was not appointed

and confirmed until September 1980, it has only

begun its work. Its first task was a review and

revision of NIHR’s 5-year plan.

Veterans Administration. -As mentioned earlier, VA has been involved in disability-related

research since the late 1940’s. For many years, VA

was the primary supporter of federally sponsored

research in this area, especially in the field of prosthetics research. Since 1947, VA has spent over

$25.5 million on prosthetics research alone, not

including the money devoted to the support of

the VA Prosthetics Center on the VA Research

Center for Prosthetics in New York City (152).

In the last few years, VA has expanded its disability-related research focus to include a broader

range of areas. The establishment of the Rehabilitation Engineering Research and Development

(RER&D) program is the VA’s response to the increased research and service needs of the veteran

population and of disabled people in general.

The VA health care system is the largest health

care delivery organization in the Nation. It encompasses 172 medical centers, 100 nursing

homes, 16 domiciliaries, and 229 outpatient

clinics. VA employs the full-time equivalent of approximately 181,440 physicians, dentists, nurses,

and administrative and support personnel (218).

Further, there are an estimated 28 million veterans

over age 40 who are eligible for health care services should the need arise (151). VA presents a

unique example of a system that includes the continuum of clients, needs, facilities, money, personnel, and the mandate to develop, deliver, evaluate, and support a full range of technologies and

services to disabled individuals. It also provides

an excellent setting for the evaluation of medical

technologies. Neither VA, the private sector, nor

any of the other Federal agencies has made much

use of this system for such evaluation. The service aspects of the VA system are discussed in

greater detail later in chapter 9.

VA has three centers that perform or support

varying types of rehabilitation R&D. One, the VA

Prosthetics Research Center in New York City,

is organizationally separate from the RER&D program. The two other centers are directly tied to

the VA RER&D program: one located in the Palo

Alto VA Medical Center in California, and one

in the Hines VA Medical Center in Chicago. The

RER&D program is also establishing universityaffiliated research engineering programs to help

support qualified engineering graduate students

and faculty who undertake rehabilitation engineering projects (37). The thrust of this program

is twofold: 1) to interest engineering students in

rehabilitation engineering (a critical shortage of

trained rehabilitation engineering professionals

exists in this country*); and 2) to infuse new ideas

and concepts into the VA RER&D program by

having a flow of information on program needs

and possible solutions between academia and VA.

In addition, the RER&D program supports investigator-initiated projects, both intramurally and

extramurally, that are outside the efforts of the

two RER&D centers. With the strengthening of

in-house capabilities at the RER&D centers and

in the university-affiliated programs, however, it

is moving away from extramural support.

The RER&D program is a result of the increased

focus on rehabilitation research and engineering

needs at VA and at the national level in general.

In 1973, this program was separated from the general R&D efforts of VA and given the mandate

*In 1976, a workshop held at the University of Tennessee recommended that a master’s degree in rehabilitation engineering be established for qualified engineers and that it include training in computer science, anatomy, clinical medicine, and appropriate engineering disciplines. These recommendations were made with the following factors in mind: 1) there are currently (in 1976) only 50 individuals designated and functioning as rehabilitation engineers; 2) the

current estimated need is for 250 rehabilitation engineers; and 3)

the projected need for rehabilitation engineers is 1,ooO in 5 years

and 2,000 in 10 years (123).
Ch. 6—Research and Development . 65

to improve the quality of life and facilitate greater

independence for physically disabled veterans.

The program is to do this through research, development, and evaluation of new devices, techniques, and concepts in rehabilitation. In addition, the RER&D program is required to coordinate and cooperate with NIHR and to support

RECs. (This does not mean that VA is obligated

to assist these centers financially. Rather, support

takes the form of information exchange and consultation regarding ongoing efforts at both agencies. ) The RER&D program is primarily a hardware—sophisticated technology—oriented effort

that has as its major goal the development of

usable devices that assist individuals, have an impact on the delivery of clinical services, or assist

in increasing the availability of new devices on

the open market. The RER&D budget was $8.1

million in fiscal year 1980 and is estimated to be

$8.8 million in fiscal year 1981. The personnel ceiling is 143—including centers, university programs, and RER&D staff. Table 3 summarizes the

budget distribution and the priorities and research

goals established by VA. Table 4 provides an

overview of the RER&D budget in relation to the

VA’s overall medical and health services research

effort (37).

Other Federal Agencies .—NASA and NSF are

also involved in hardware-oriented research in this

area. NSF’s authorizing legislation (Public Law

95-434) for fiscal year 1979 included $2 million

for disability-related research programs in the Applied Sciences Research Applications Directorate.

NSF has supported grant requests dealing with

various aspects of disability-related research. Two

examples are: 1) the Johns Hopkins University

project on personal computing to aid disabled

people—a project in conjunction with the Tandy

Table 3.—Veterans Administration RER&D Budget

Distribution (thousands of dollars)

RER&D centers and affiliations . . . . . .

Amputation/surgical procedures . . . . .

Prosthetics/orthotics . . . . . . . . . . . . . . .

Blindness and visual impairment . . . . .

Hearing and speech impairment . . . . . .

Kinesiology (Gait analysis) . . . . . . . . . .

Mobility . . . . . . . . . . . . . . . . . . . . . . . . . .

Spinal cord injury . . . . . . . . . . . . . . . . . .

Maxillofacial restoration . . . . . . . . . . . .

Robotics. . . . . . . . . . . . . . . . . . . . . . . . . .

Functional electrical stimulation or

neural control . . . . . . . . . . . . . . . . . .

Fiscal

year

1980

$2,425

1,483

910

749

729

543

524

269

212

165

119

Estimated

fiscal

year

1981

$2,450

1,547

1,045

823

804

682

576

297

230

196

134

Total ., ... , ., . . . . . . . . . . . . . . . . . $8,085 $8,784

SOURCE. Veterans Admlntstratton

Corp. to develop computer-based programs and

ideas to aid disabled individuals; and 2) a project to develop a graphic computer display that

blind and visually impaired people can use to create, edit, interpret, store, and retrieve full page

braille and tactile programs. Other projects include “Micro-Processor-Based Prosthetic Controls” and a “Needs and Design Concepts for

Voice-Output Communications Aids” grant (157).

Given the current budget situation and research

goals of NSF, however, it is unlikely that this program and NSF’s interest and involvement in disability-related research will thrive.

In the late 1970’s, Congress formally expanded

the mandate of NASA by adding bioengineering

for disabled people to its functions (Public Law

95-401). Congress felt that (211):

The general welfare of the United States requires that the unique competence of NASA in

science and engineering systems be directed to

Table 4.—Veterans Administration R&D Budget Overview (thousands of dollars)

Fiscal year

1977 1978 1979 1980 1981

Medical research program . . . . $101,567 $108,153 $118,016 $122,745 $129,943

Staffing. ., ., . . . . . . . . . . . . . . 4,220 4,367 4,217 4,171 4,171

RER&D program . . . . . . . . . . . . 4,419 5,502 7,191 8,085 8,784

Staffing. . . . . . . . . . . . . . . . . . . . 69 90 112 143 143

Health services R&D program 3,604 2,996 3,004 3,153 3,083

Staffing. . . . . . . . . . . . . . . . . . . . 45 90 105 104 104

SOUFtCE. Veterans Admlnlstration
66 ● Technology and Handicapped People

assisting in bioengineering research, development, and demonstration programs designed to

alleviate and minimize the effects of disability.

NASA has been involved in transferring technology and information gained from its bioengineering efforts, as well as its general research efforts, to the health care sector since the late 1960’s.

Biomedical applications teams attempt to: 1) identify and interpret national trends in medicine as

well as technology-related problems in health care

delivery, and 2) develop potential solutions to

these problems through the use of aerospace technology (227). NASA tries to pursue technology

transfer opportunities when it finds that: 1) a

problem is recognized as significant by medical

agencies; 2) a solution in the form of a commercially available product is not available or anticipated; 3) a solution would make a significant contribution to medical research or to clinical practice; 4) the problem can be defined in terms that

indicate the applicability of aerospace technology;

5) the solution requires application engineering

rather than basic research; and 6) the application

has a high probability of success in the marketplace (227). Figure 4 illustrates the process that

NASA employs to implement these guidelines. It

also provides a model that might be useful as a

general guide to the technology transfer process

of other Federal agencies involved in disabilityrelated research, development, and diffusion.

NASA has attempted three types of bioengineering applications projects—commercial, institutional, and demonstration. Commercial projects are those that directly involve a manufacturer; institutional projects are those developed

by a Federal agency; and demonstration projects

are ones for which NASA develops the prototype

on its own (227). An example of a commercial

project is the fully implantable, programmable,

rechargeable human tissue stimulator that was

developed in conjunction with the Johns Hopkins

Applied Physics Laboratory. An example of an

institutional project is the Autocuer, an automated

speech analyzer developed as a joint venture between NASA and VA, on the basis of initial work

sponsored by NINCDS, with the involvement of

NSF, the Research Triangle Institute, RSA, Bureau

of Education for the Handicapped, and a Gallaudet College scientist. The liquid-cooled garment used for temperature control is an example

of a demonstration project that NASA pursued

as a result of its research that had potential in the

biomedical/disability area. Other examples of

NASA’s technology development and transfer efforts are the rechargeable cardiac pacemaker battery, heat activated switches, a hand-finger flexor,

and biocompatible pure carbon that has proven

very useful in prosthesis attachment materials

(226). Obviously, research in the area of disabilities is not NASA’s primary focus; rather, it

is a lower level priority to be pursued as part of

NASA’s overall research and technology transfer

efforts. NASA devotes about $600,000 to

$750,000 to projects related to disabilities, and less

than $2.5 million to its entire bioengineering applications programs.

Other Federal agencies that fund R&D programs in the disability-related area are DOT, the

Department of Labor, NBS, the Department of

Commerce, the Food and Drug Administration,

the Health Care Financing Administration, the

Social Security Administration, and DOD. These

and other agencies have varying degrees of involvement in research on disability-related issues.

Recent legislation and the increasing militancy of

advocacy groups have forced many Federal and

State agencies to examine a wide variety of issues

in this area.

RSA is primarily oriented towards the delivery

of services at the State and local level via its

matching grants programs, which include a small

percentage of funds for innovative programs to

improve the quality and delivery of services. Most

of its research programs were shifted to NIHR

when that agency was created in 1978.

OSE still retains a significant research budget

that is geared mostly toward the “soft” research

areas (i. e., nonhardware directed areas of research). OSE is the third largest Federal supporter

of disability-related research and the largest in the

area of educationally related efforts. OSE’s research priorities include programs for deaf-blind,

severely disabled, and gifted and talented persons,

for early childhood educational programs, for

media and research uses, and for special education personnel development projects.
—

●

●

●

●

●

●

●

●

●

●

●

●

●

●

Aeronautics

Space

Hardware/software

People

Competitive RFP/RFQ

Formal agreement

Informal agreement

Market studies

Prototype design

Cost/price studies

Patents/incentives

Competitive RFP/RFQ

Formal/informal

agreement

License

Ch. 6—Research and Development ● 67

Figure 4.— NASA’S Technology Transfer Process

Technologyrelated

requirement

in clinlcal

medicine

I

NASA ●

technology

d

Select Ion Technical of potential 4

manufacturer feasibility

1 I

Interact Ion by

manufacturer I n Prototype

commercialization

process

Medical

evaluation

Selection of

establishment

manufacturer I

L

I I

●

●

●

●

●

●

●

●

●

●

●

●

●

●

●

●

●

Mission agency

Scientific publications

Workshops

Paper studies

Market studies

Prototypes

Funding plans

Patent positions

Product definition

Cost analyses

Manufacturer

Mission agency

Medical community

Clinical trials

Publications

Presentations

Shows

Commercialization

process ● Licensing

● Product development

● Manufacturing

SOURCE R P Whlftel Technology Transfer NASA s B1oenglneerlng —Appllcatlons Program, ” Med/ca/ Dev/ces and D/agnosf/c /ndusfry Month/y September 1980

NIH presents an interesting definitional problem. A very good argument could be made that

most of its basic and applied biomedical research

directly or indirectly affects currently or potentially disabled people. NIH then becomes the runaway leader in the disability-related research area.

Using a more restricted set of criteria still puts NIH

near or at the top in terms of resources devoted

to research in this area.

NINCDS is currently supporting research on

regeneration of spinal cord, or the central nervous

system (CNS) nerve tissue. Such research is potentially of great value to the population with spinal

cord injuries (103). NINCDS also has a Neural

Prosthesis Program that is currently working on

a project involving artificial control of the bladder through electrical stimulation (103). Persons

with muscular dystrophy, multiple sclerosis,
68 . Technology and Handicapped people

cerebral palsy, speech, and other communication

impairments, as well as accident victims, may

benefit from a device developed at the University

of Idaho with funding from the Division of Research Resources at NIH. This device allows a

nonvocal individual to work with a computer and

video screen to communicate (67). These examples

illustrate the NIH involvement in a mixture of

biomedical and, to a degree, engineering projects

that are very relevant to disabilities.

The Private Sector Role in

Disability-Related Research

It is difficult to characterize the “private sector” involvement in disability-related research.

The private sector may mean a large, multinational, multiproduct, billion-dollar-a-year company like the Johnson & Johnson Corp., or it may

mean a small, single-product firm like Amigo

Sales Co., or possibly a private nonprofit organization such as the Cystic Fibrosis Foundation

or Muscular Dystrophy Association. These diverse organizations provide a wide variety of

products and services to disabled people. However, each is quite different from the others in

terms of priorities, resources, and function. Manufacturers of health-related devices that specifically serve disabled people are frequently referred

to as part of the medical device industry. In addition, there are thousands of agencies that derive

their funds from charity or provide philanthropic

services; these may be foundations, service organizations, funds, or associations. The medical

device industry and charitable foundations and

related organizations are both extremely diverse

groups that exist to serve an equally diverse

“market .“

The value and impact of voluntary contributions to the health care sector of society are significant. In 1980, Americans contributed a record

$5.95 billion to health causes and hospitals (3).

Table 5 provides a breakdown of the major

health-related organizations (3). Most, if not all,

Table 5.—National Health Agencies

1979

Agencies

American Cancer Society, Inc.. . . . . . . . . . . . . . . . . . . . . . . .

American Heart Association . . . . . . . . . . . . . . . . . . . . . . . . .

The National Foundation . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Muscular Dystrophy Association, Inc. . . . . . . . . . . . . . . . . .

National Easter Seal Society . . . . . . . . . . . . . . . . . . . . . . . . .

American Lung Association. . . . . . . . . . . . . . . . . . . . . . . . . .

Planned Parenthood Federation of America, Inc. . . . . . . . .

National Association for Retarded Citizens. . . . . . . . . . . . .

National Multiple Sclerosis Society . . . . . . . . . . . . . . . . . . .

United Cerebral Palsy Association, Inc. . . . . . . . . . . . . . . . .

The Arthritis Foundation . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Mental Health Association . . . . . . . . . . . . . . . . . . . . . . . . . .

Cystic Fibrosis Foundation . . . . . . . . . . . . . . . . . . . . . . . . , .

American Diabetes Association, Inc. . . . . . . . . . . . . . . . . . .

Leukemia Society of America, Inc. . . . . . . . . . . . . . . . . . . . .

National Kidney Foundation . . . . . . . . . . . . . . . . . . . . . . . . .

National Society to Prevent Blindness . . . . . . . . . . . . . . . . .

Epilepsy Foundation of America . . . . . . . . . . . . . . . . . . . . . .

Recording for the Blindb 

. . . . . . . . . . . . . , . . . . . . . . . . . . . . .

Juvenile Diabetes Foundation ... , . . . . . . . . . . . . . . . . . . . .

The National Hemophilia Foundation ... , . . . . . . . . . . . . .

American Foundation for the Blind, Inc. . . . . . . . . . . . . . . . .

Damon Runyon-Walter Winchell Cancer Fund . . . . . . . . . .

National Council on Alcoholism . . . . . . . . . . . . . . . . . . . . . .

Total Contributions Beauests 1978

$142,138,732 $102,778,011 $39,360,721 $126,106,570

82,938,148

65,170,640

65,016,996

52,000,000’

47,000,000*

35,000,000*

34,465,963*

27,242,099

24,888,956*

18,000,000*

1 5,000,000*

1 4,500,000*

11,996,043

11,314,627

9,306,368

5,600,000*

4,800,000*

3,642,594

3,261,061

3,1OO,OOO*

2,459,967

1,009,225

845,582

59,594,573

63,765,738

62,736,755

46,323,000 a

45,500,000a

34,500,000*

33,851,235*

26,052,827

24,274,853*

1 4,000,000*

14,640,000*

14,450,000*

11,433,379

10,850,156

9,088,429

3,600,000*

4,500,000*

2,928,619

3,261,061

3,1OO,OOO*

1,131,515

140,452

783,272

23,343,575

1,404,902

2,280,241

5,677,000*

1 ,500,000a

500,000*

614,728*

1,189,272

614,103*

4,000,000*

360,000*

50,000*

562,664

464,471

217,939

2,000,000*

300,000*

713,975

—

1,328,452

868,772

62,311

73,801,722

64,692,941

57,635,996

46,921 ,946’

45,548,629’

29,334,747 C

30,605,321’

25,206,469

20,010,219C

17,109,399C

14,81 1,703’

12,723,617C

10,945,701C

10,757,023

7,739,719

4,799,622’

4,755,719’

3,384,646

2,498,083

3,500,000

3,875,444

2,498,083

966,425

Total . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . $680,697,001 $593,283,875 $87,413,126 $622,229,744

aEstimate

b Educatlonal Organizatio n

‘Revised

SOURCE American Assoclatlon of Fund Ralslng Council, Inc , G/vir?g U .S A 1980 Annual Report, 1980
—

Ch. 6—Research and Development ● 69

of the top 24 health-related agencies deal directly, or certainly indirectly, with a range of disabling and handicapping conditions. Many of

these organizations support ongoing R&D efforts

in their areas of interest. Often, these organizations are primary actors in the development,

delivery, and purchase of new technologies for

their constituent groups. With yearly budgets in

total exceeding $680 million, these organizations

are powerful forces in the disability-related R&D

system and are significant contributors to the service delivery system as well.

The general medical technology industry is a

collection of over 3,OOO firms responsible for over

12,000 products at an annual sales level of over

$9 billion (34,221). In terms of firm size, 80 percent of the medical technology companies have

annual sales of less than $2o million; the remaining 20 percent are much larger and, in almost all

instances, are multiproduct companies (221)—

e.g., Johnson & Johnson had total sales in 1975

of $2.25 billion, American Hospital Supply Corp.

claims to distribute over 57,OOO different products,

and Everest & Jennings had gross revenues of $51

million in 1975 (34). One study, by Wenchel,

found that there are essentially two types of companies in this industry: large, multinational and

multidivisional companies with a variety of products; and smaller, single- or several-product firms

(221).

Several studies have indicated that the industry

is somewhat noncompetitive (34,221). Yet,

Wenchel points out that in the realm of technical

innovation (rather than in the cost of products),

there does seem to be some competition (221). She

further states that the market is highly responsive

to new products, with a high entry and exit rate

among new firms, especially among the smaller

firms. The small, single- or several-product firms

are often the ones introducing innovative technologies into the marketplace; this is their ticket

into the arena (221):

The measures of R&D and patent activity reflect a higher level of innovation than can be

found in most industries in the U.S. economy . . . The medical technology industry appears to have maintained its levels of R&D by

providing funding that the Federal Government

had previously provided. Further, the level of patent activity is twice that existing in other industries throughout the U.S. economy.

A great deal of debate surrounds the issues of

how much R&D is enough, who should do it (e.g.,

should Everett & Jenning support more R&D on

wheelchair design, or just wait for and use the

results of the numerous federally sponsored studies in this area?), and who should benefit financially from the complex interaction of private/

public/nonprofit sponsored research efforts.

It is difficult and perhaps deceptive at times to

use an industrywide description-medical devices

industry-to characterize the efforts of a single

firm or a specialized group of firms. The industry

is too diverse, even if one can narrow the category

to disability-related firms. Perhaps one good indicator of what and how much activity is going

on is the visibility and frequency of articles in general circulation publications. When innovations

or trends reach this level of the business community’s or the public’s awareness, especially in a specialized area such as this, then there may be a sig

-

nificant level of activity below the visible surface.

Articles in Business Week (24,25), Medical

World News (139,140), The New York Times

(160), Discover (220), and the Wall Street Journal (190) are representative of the “general circulation” accounts of the increase in corporate interest,

investment, product development, and marketing

of technologies for disabled people. Most of the

activity that has reached this level of recognition,

though, has been in the area of fairly sophisticated

technology. It is almost a certainty that by far the

largest share of corporate interest is geared toward

the application of emerging technologies that are

hardware based. Examples of the types of technologies that have received media attention are

the Kurzweil Reading Machines, electronic communication devices, voice-command control systems, new types of wheelchairs, (the Amigo, the

Levo chair, and battery-powered chairs), the Lifeline Emergency Alarm and Response System, the

Autocom, environmental control systems, bionic prostheses, robotics, television captioning systems, microcomputer controlled implants, the Optacon, and artificial organs. Obviously, these

technologies are the “gee-whiz” offerings that are

in, or coming into, the marketplace, This obser-
70 ● Technology and Handicapped People

vation does not mean to say that there is no activity in the more mundane, yet critical, areas of

disability-related R&D—but the latter type of acDISCUSSION

The research goals and priorities in the disability-related R&D process are, to state it mildly, diverse and challenging. The Federal agencies

working in this area have extremely broad mandates to address very complex and difficult problems. The research agenda of NIHR alone is overwhelming. The agencies will not be able to do it

alone. Private and nonprofit organizations are key

components in the R&D process. To date, Congress has recognized great potential in R&D

related to disabilities, but the organization of the

R&D effort has been inadequate for substantial

results. The Federal Government devotes approximately 0.7 percent of the total amount of healthcare related research funds to research directly

related to disabilities. The annual expenditure for

direct disability-related R&D has been estimated

to be between $1.00 and $2.92 per disabled person (210). The private sector’s contribution is very

difficult to determine, but it, too, appears to be

less than the amount that could profitably be

used. The purpose, though, is not to arrive at precise figures, but rather to obtain and provide a

general sense of the level of public and private

commitment to the needs of disabled people. The

R&D activity is a very important component of

the effort to meet those needs. The current research needs are extensive. The ability of the Federal Government to reach those goals, given current outcomes of R&D, is limited.

It is possible that the combined efforts of NIHR,

VA, NASA, RSA, DOD, the many other agencies that are involved in this process, and the private sector will be able to make a significant contribution to the population of disabled people.

There is reason for some optimism. The focus of

R&D, while still firmly entrenched in the “hardware” approach to solving problems, is slowly

changing to incorporate and value the work in

services, delivery systems, appropriate technology

solutions to problems, evaluation of R&D efforts,

and the other inputs that are necessary to the

tivity is not as evident or glamorous, and possibly

not as rewarding (intellectually, scientifically, or

financially) to many scientists and investors.

“total” rehabilitation of the individual. The research network is being formed to combine these

varied fields of investigation. The challenge is to

fit the parts together to make a coordinated, comprehensive, and effective research effort that will

respond to the changing needs of increasingly active and independent disabled people.

The use of the peer review and advisory council system to assess the value and performance of

research products and the likelihood of success

of research proposals, deserves attention. Various

agencies have different approaches to making use

of committees of experts and in-house professionals to judge the quality of the programs and

research proposals being funded and the resulting

research products.

VA uses a combination of in-house professionals, the directors of its various departments

and programs, in conjunction with a panel of nonVA experts drawn from a range of disciplines.

This two-level process is used to help set research

priorities and to conduct reviews of research proposals and results. The NIH dual advisory/peer

review system is well known and does not need

elaboration here. The existing peer review systems

in other agencies are usually variations on the NIH

system.

The RSA peer review system has been an “onagain, off-again” system over the last decade. Currently, it is an “on-again” system that uses the

“project announcement in the Federal Register”

system as the first step in the process. From there,

proposals submitted are routed to internal RSA

staff and, if appropriate, to relevant regional rehabilitation officials. There is also a peer review

process for research proposals that is conducted

by non-RSA, non-Federal Government experts

(97).

NIHR also goes through the program announcement process in the Federal Register. In the
Ch. 6—Research and Development ● 71

past, this process was followed with a weak, infrequently applied peer review process. The agency is now in the process of implementing a formal peer review process in its project/program

selection and evaluation process, The VA system

is much better established and has been more effective than NIHR’s. NIHR, prior to the recent

changes, concentrated most of its priority-setting

efforts in the long-range plan development

process.

It should also be noted at this point that announcing project proposals in the Federal Register

may satisfy public notification requirements, but

it does not guarantee quality research. Often these

announcements can be so vague and all-inclusive

that the agency discretion retained in the selection process is almost unbounded. Peer review

systems are workable and effective only if the

spirit of the process is honored rather than just

the letter of the law.

An idea suggested to OTA is the removal of

much of the peer review process in favor of much

stronger program and project manager systems.

To a large degree, this idea follows the administrative model used by NASA—i. e., a very

goal-oriented, results-directed approach where the

various program and project directors are given

significant leeway within the general goals of the

project being conducted. The effectiveness of the

personnel involved and the quality of work being

conducted are measured in terms of the performance and success of the program and project. The

advantage of a system such as this, especially in

an applied research setting, is that once the program or project goals are established (possibly the

most difficult part of this approach), the various

administrators and scientific personnel are left to

reach their goals in the most effective and efficient means at their disposal. There are many

obstacles to using this approach, but it is worth

noting and perhaps considering (at least on a pilot

or demonstration basis) for certain projects. This

system seems less appropriate for the setting of

research priorities or the awarding of initial R&D

contracts and grants.

The disability-related R&D system at present

is primarily operating on a basic research

model—i.e., one where the funding agencies react

rather than act. This approach seems appropriate

for basic-research-oriented programs and projects.

However, a large part of this R&D area is geared

to applied research goals and needs. OTA was frequently told that there are numerous, potentially useful devices in existence: “We are overwhelmed by available technology; we just need

to get it to the consumers so they can adopt it to

their uses at a price they can afford.”* Having

Federal agencies or researchers attack these “applied research” problems a piecemeal and basic

research approach only exacerbates the view that

little of value has resulted from the money, time,

and efforts of the myriad research centers and programs supported by the Federal Government.

The alternative to the “goal-oriented” approach

is a system of rigorous peer review. The NIH dual

review system has served the biomedical and

health care systems well. By adopting a similar,

though modified, system in this area, the resulting

information and products that come out of the

federally supported disability-related R&D process may be of a higher quality and thus useful to

a wider range of consumers, researchers, manufacturers, and others. On the basis of its research

and the results of its public outreach survey, OTA

finds that there is a common perception, though

certainly not a unanimous one, on the part of consumers and the scientific and professional communities that much of the research conducted in

this federally supported system is of poor quality. Strengthening the formal peer review systems

of this process could help to alleviate some of these

problems. However, effective evaluation mechanisms are very much dependent on the “stateof-mind” in an organization and should be more

than a pro forma attempt at satisfying a legislative

or agency requirement.

● Other people, however, beIieve that “overwhelmed” is a deceptive term. They believe that there are some technologies ready for

diffusion but that other existing technologies need to be better developed prior to widespread use.
7.

Evaluation of Technologies

Be not swept off your feet by the vividness of the impression, but say,

“Impression, wait for me a little. Let me see what you are and what you represent. Let me try you.” —Epicetus
Contents

Page

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ” ...”””-”” “”””...””-” 75

Current Activities and Programs. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 76

Discussion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ....”...”..”...””.”””” ““.””””.. 81

LIST OF TABLES

Table No. Page

6.DHHS Technology Coordinating Committee . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 76

7. Non-DHHS Agencies Involved in Evaluation of Health Technology. . . . . . . . . . . . . . . 77
Evaluation of Technologies

INTRODUCTION

Evaluation covers a broad spectrum of activities. Depending on the importance and nature of

a given innovation, public agencies, nonprofit

organizations, and private sector firms will rely

on a number of criteria to evaluate a given technology. The historically most common, and perhaps most important, criteria used in the initial

stages of evaluation and development of healthrelated research products are safety, efficacy,

technical feasibility, and technical performance.

For commercial products (or potentially commercial products, even if developed with public or

nonprofit funds), another basic criterion is potential profitability.

Other criteria will then follow. Depending on

the use or intended market for the innovation,

evaluation efforts might include such “tests” as:

effectiveness, suitability for the goals of its use,

reliability, cost, repairability, convenience, affordability, esthetics, consumer satisfaction, patent protection, legal impacts, liability concerns,

accessibility, reimbursement status or potential,

social implications, cost-effectiveness determinations, ethical concerns, and so on.

The periodic efforts of the National Institutes

of Health (NIH), the Veterans Administration

(VA), and other health-related agencies tend to

rely on and support safety and efficacy more often

than any of the other criteria. The Food and Drug

Administration (FDA) requires drug and device

manufacturers to focus on safety and efficacy

criteria if they produce items that fall within

FDA’s jurisdiction. If VA and the National Institute of Handicapped Research (NIHR) develop

devices that fall within FDA’s guidelines, they too

must submit them for clearance. The private sector manufacturers, as well as NIHR, VA in its

rehabilitation research role, and the National

Aeronautics and Space Administration (NASA),

also rely on many of the evaluation criteria cited

above to help guide their decisionmaking.

The major issue, though, remains: Are the evaluation efforts of the public and private sectors sufficient to adequately inform the many levels of

decisionmaking related to technology for use by

disabled people? Current analysis and informed

opinion indicates to OTA that the answer is an

emphatic “No. ”

If one examines the literature on the adequacy

of evaluation efforts concerning safety and efficacy in the health care system in general, it is

clear that there are noticeable weaknesses in the

process. A recent OTA study assessed the state

of evaluating the safety and efficacy of medical

technologies and identified several shortcomings

in the evaluation process (164):

●

●

●

●

●

●

●

●

●

●

There is no formal or well-coordinated

overall system.

Identification of technologies to be studied

remains an underdeveloped, usually agencyspecific, process.

Existing technologies are identified much less

frequently for study than are new and developing technologies; thus, they are studied

much less frequently.

Medical drugs and devices are subject to a

more rigorous process of assessment than

medical procedures.

Preventive technologies receive far less attention than therapeutic ones.

Serious questions have been raised concerning the adequacy of funding for clinical trials

and other types of evaluations.

Synthesis activities are still at a modest level

despite their recent expansion,

The quality and appropriateness of medical

literature, the primary source of synthesized

information, has been criticized.

Synthesis activities cannot be adequate when

there is a critical lack of information regarding efficacy and safety.

Federal agencies have not assigned a high priority to disseminating information,

75
76 ● Technology and Handicapped People

In the disability technologies area, OTA found

similar weaknesses. In fact, shortcomings in this

area are more pronounced than in the medical

technology area. The reasons for this are difficult

to know with much certainty. It appears, though,

that there is less of a tradition of formal and scientific evaluation in the rehabilitation area, that the

diversity of disabilities makes evaluation extremely complex, that the technologies in this area are

sometimes seen as less “medically necessary” and

thus less in need of careful evaluation, that few

funds are devoted to evaluation, and that emotionalism is very strong in this area, making evaluation a difficult undertaking.

Actual or potential improvements in many of

the areas listed above for medical technology

evaluation can be in part attributed to the (now

ended) existence of the National Center for Health

Care Technology (NCHCT). * For example, over

half of the items on NCHCT’S list of emerging

technologies that might need assessment were existing ones (this does not mean that they would

have been assessed). To the extent, which might

have become considerable, that NCHCT would

have been involved with disability-related technologies, there was distinct potential for significant improvements in the evaluation process.

However, NCHCT received no funds for fiscal

year 1982 and stopped functioning in December

of 1981.

*NCHCT was established by statute in 1978 in response to the

feeling of Congress that not enough careful and scientific evaluation of medical technologies was being done to assure its appropriate

use. Further, there was no focus for coordinating the numerous

related activities taking place,

CURRENT ACTIVITIES AND PROGRAMS

Oddly enough, there is no shortage of agencies,

organizations, and academics interested in the

various issues surrounding the evaluation of technologies. If, for example, one examines the list

of Department of Health and Human Services

(DHHS) representatives to the Department’s Technology Coordinating Committee, it is, if not surprising, then disappointing that such a disparity

between interest and information exists. Table 6

shows those representatives. A similar breadth of

potential involvement in evaluation is shown by

the list in table 7 of non-DHHS agencies that are

involved, to some degree, in health-related technology issues.

The level of Federal effort—money being spent

on evaluation efforts—is impossible to fully determine. It is fairly accurate to say that no one really knows how much is being spent, either Government-wide or at specific agencies, The reason

for this is easy enough to understand—it is difficult to define what activities, projects, or programs should or should not be counted when tallying up what the various agencies or programs

consider “evaluation” activities. At best, agencies

can provide rough estimates of these activities and

spending levels. OTA has estimated that about

Table 6.—DHHS Technology

Committee

—

Representatives of

Coordinating

Alcohol, Drug Abuse, and Mental Health Administration

Centers for Disease Control

Food and Drug Administration

Health Care Financing Administration

Health Resources Administration

Health Services Administration

National Center for Health Statistics

National Center for Health Services Research

National Institutes of Health

Liaison representatives:

Office of Health Research, Statistics and Technology

Office of Science and Technology Policy, The White House

Office of Technology Assessment, U.S. Congress

Veterans Administration

National Institute of Handicapped Research

Department of Education

Office of Civilian Health and Medical

Uniformed Services

SOURCE Office of Technology Assessment

$200 million a year is spent

Program of the

— --

on evaluation of

health technologies in general. The amount spent

on disability-related health technologies is probably only a minor fraction of this amount. The

exact amount of this fraction is not known. However, as a point of comparison, the percentage of

total Federal health care research and development
Ch. 7—Eva/uation of Technologies ● 7 7

Table 7.— Non-DHHS Agencies Involved in

Evaluation of Health Technology

Department of Agriculture

Department of Commerce

Department of Defense

Department of Education

National Aeronautics and Space Administration

National Academy of Sciences

National Bureau of Standards

National Science Foundation

Office of Management and Budget

Veterans Administration

White House Office of Science and Technology Policy

U.S. Congress—committees and support agencies

Senate Finance Committee

House Ways and Means Committee

Senate Labor and Human Resources Committee

House Energy and Commerce Committee

Senate and House Veterans’ Affairs Committees

Senate Special Committee on Aging

Housing Select Committee on Aging

Senate and House Budget Committees

Senate and House Appropriations Committees

House Science and Technology Committee

Senate Commerce, Science, and

Transportation Committee

Office of Technology Assessment

Congressional Research Service (Library of Congress)

Congressional Budget Off Ice

General Accounting Office

C) fflce of Technology Assessment

(R&D) represented by evaluation of technologies

is roughly 5 percent—and that is in an area with

a stronger tradition of evaluation of technologies

than the disability-related area.

Three additional areas of Federal evaluation activities should be mentioned here: 1) the requirement of the Medical Devices Amendments with

respect to FDA’s mandate (Public Law 94-295),

2) the relatively new directives to the National

Bureau of Standards (NBS) (H.R. 96-949), and 3)

the consensus development conferences of NIH.

In the fall of 1977, NIH began a program of

consensus development designed to improve

knowledge on the safety and efficacy of medical

technologies and to transmit any information

gained to the practicing physician and the public.

Each conference, involving scientists, practicing

physicians, consumers, and others, is set up to

generate conclusions and recommendations concerning specific medical technologies. The conferences are run by the various Institutes of NIH;

the Office for Medical Applications of Research

of NIH is the coordinating and assisting office.

Several of the topics that have been covered or

are scheduled to be covered are directly relevant

to the disability area—e.g., continuous a m -

bulatory peritoneal dialysis, prevention of

osteoporosis in aging, and artificial hips.

In May of 1980, the Science and Technology

Committee of the U.S. House of Representatives

directed NBS to “undertake a general review of

its activities in the disability area, and to develop

a focused plan detailing potential opportunities

within NBS and for interagency cooperative, projects . . . “ (23). The Bureau has, in the past, conducted evaluative projects that have had relevance

to disabled people. It has developed and evaluated

devices to measure slip resistance on walkways

for building accessibility, conducted performance

and reliability tests on hearing aids and cardiac

pacemakers, developed the implant standards for

acrylic bone cements and metals and, in general,

has helped address technical issues related to the

needs of disabled individuals. Its product performance testing and materials research experience and

capabilities make it a valuable asset to the area

of evaluation.

However, the degree to which NBS will be able

to be involved in disability-related research and

testing is yet to be determined. The major problems are time and money. NBS performs almost

40 percent of its work at the request of other

Federal agencies; the work is done on a reimbursable basis when it is determined to be of mutual

benefit and meets one of two conditions (23):

The Other Agency needs measurements,

standards or data for application that are so

specific and programmatically focused that they

would not ordinarily be carried out under the

general NBS measurement mandate; or the Other

Agency has a technical problem that could be

most efficiently and effectively solved by using

a unique Bureau expertise.

The Committee on Science and Technology encouraged NBS to continue and strengthen its activities in providing measurement technology and

performance standards as they relate to devices

and facilities unique to disabled and elderly people. However, in a climate where rehabilitation

agencies are already operating with decreased, and

perhaps further decreasing, budgets, it is difficult
78 ● Technology and Handicapped People

to see how or whether these agencies will be able

to “purchase” evaluation efforts from NBS or accept the research criteria established by NBS for

taking on non-NBS research projects. Perhaps,

NBS will be of most appropriate use as a reference

laboratory for information related to general

measurements, methods, standards, and data in

specialized technical and materials areas.

In 1976, Congress enacted the Medical Device

Amendments to the food and drug legislation. The

degree to which FDA exercises regulatory control

over the development, manufacturing, and marketing process will depend on a device’s potential risk and classification. Wenchel provides a

good review of the three classifications and what

they will entail (221):

Class I: General Controls

Use: Where controls other than standards and

premarket approval are sufficient.

Scope: Applies to all devices except those specifically exempt. Prohibits adulterated or misbranded devices. Requires registration of establishment and listings of devices. Retains authority to ban certain devices. Provides for the notification of risk, repair, replacement or refund.

Has requirements for good manufacturing practices including record keeping and inspections.

Examples: Dental floss, blood mixing device,

tongue depressor.

Class II: Performance Standards

use: Where general controls are insufficient

but sufficient information exists or could be developed to establish a performance standard.

Scope: Includes all provisions of general controls. Requires adherence to a performance

standard, when available, which may also cover

construction, components, and properties.

Examples: Electrocardiograph, vascular catheter, administration kit.

Class III: Premarket Approval

Use: Where general controls or performance

standards may not provide reasonable assurance

of safety and effectiveness for a device that is life

sustaining, life supporting, implanted, or presents a potential unreasonable risk of illness or

injury or where a performance standard cannot

be developed.

Scope: Requires all substantially new or different devices to obtain premarket approval.

Examples: Implantable pacemaker, infant radiant warmer.

FDA is developing for each of these categories

criteria and standards that new devices will have

to meet to receive approval. The importance of

FDA’s involvement in this area is the stimulation

of evaluation activities in the areas and technologies affected. It is felt among many manufacturers that FDA’s involvement will also place burdensome administrative loads on the manufacturers

and will hamper innovation. According to critics,

the impact on the small single- or few-product

firm will be the greatest. This may be especially

serious for the disability-related R&D sector,

because so many of the innovators and manufacturers are in this category, In terms of industrywide impacts, the effect of FDA’s processes for

premarket approval and investigational device exemptions is not known (221). Also, a factor that

may possibly be more of an issue in the disabilityrelated technology area is cost. FDA’s regulations

may increase the cost of technologies that go

through the premarket approval process. These

costs might persuade a manufacturer not to develop a technology or they may be passed on to

the consumer. Disabled consumers, because of

low disposable income in general, are extremely

sensitive to and affected by price. However, if

these increased prices help to purchase safer, more

effective, and more reliable technology, then a

good argument can be made in support of FDA’s

efforts. The debate concerning this question will

continue.

The evaluation issues in the disability field

mimic the problems identified for the general

health care system. Adequate evaluation data are

rarely available for technologies for disabled people. A study cited by NIHR found that of 300 people surveyed, over 90 percent cited a need for

more buying information and advice about both

special and regular goods and services that they

rely on (52). Evaluation information concerning

product dependability and durability, ease of use,

availability of maintenance and repair services,

as well as safety and efficacy information, is sorely

needed by the consumer. In most cases, however,

it is found lacking. Such information would prove

invaluable to the users, counselors, physicians,

research community, manufacturers, third-party

payers, and all those who advise on the use of

existing technologies or innovations.
Ch. 7—Evaluation of Technologies . 79

For example, the Stanford Rehabilitation Engineering Center received a grant for a clinical

evaluation project on potentially useful controls

and interfaces for new aids and systems developed

at the center and elsewhere (187). The project

team decided to develop an evaluation model,

using a retrospective study of a mobility device—

wheelchairs with communication or interface

components—to aid them in their future evaluation efforts. As part of this process, several

evaluative criteria were selected: 1) technical performance, 2) client’s life style, 3) physical environment, 4) interaction with family, friends and fellow workers, and 5) effect on client’s self-image.

The study team proceeded to examine the literature on the benefits identified for each of these

descriptors in order to establish the data base on

which to build the remainder of the study. This

measurement was difficult to derive from the literature (187):

A review of the literature indicated that clinical

evaluation of rehabilitation equipment is either

not being carried out, or does not appear in

print. A search of the NARIC [National Rehabilitation Information Center] database resulted

in just ten items. Only three were related to

evaluation. The keyword “wheelchair-evaluation” is, in fact, not even in their dictionary,

Other written material on wheelchair evaluation

refers primarily to technical and engineering specifications. The available data on English devices

is not generally applicable to the American

market . . .

References were found indicating the need for

evaluative material. Cost and time factors, especially describing device life span and use factors,

were also not available. Nor was any information found concerning the psychosocial aspects

of using or assessing assistive devices.

This is one study being done on a specific area

of technology application. What is surprising is

the absence of information, or at least readily accessible information, regarding the major factors

required for the investigators’ study in an area—

wheelchairs—that has received so much attention

by so many organizations over the last several

years.

There are a number of other specific areas/

technologies that have also been identifed as being

ready for evaluation (65):

● Mobility aids

— Wheelchairs—Many models and makes

are available; other than at the VA Prosthetics Center, little testing has been done

in comparative evaluation or in determining prescription criteria.

— Hand controls—Clinical studies are

needed to augment VA investigations.

— Vehicles (cars, vans, etc. )—Data are

needed on the suitability of various models and makes. Clinical studies are needed

to augment VA investigations of van lifts

and controls.

— Driver simulators—Studies are needed to

determine their effectiveness for instructing various disability groups,

● Sensory aids

– Sonar cane (Mowat Development, Ltd. )

— Hearing aids having moderate bandwidth

compression

— Mowat sensor (Mowat Development,

Ltd.)

— Nottingham obstacle detector

— ELINFA portable braille recorder

— Kurzweil reading machine

— Upton eyeglass aids

● Prosthetics

— Adjustable above-knee sockets (Rancho

Los Amigos)

—Polypropylene below-knee prostheses

(Moss)

—Above-elbow osteotomy (Marquart)

• Locomotion and clinical gait

– Gait analyser (Rancho Los Amigos)

— Limb load monitor (Moss)

● Tissue mechanics

— Seat cushions (many commercial models)

— Seating systems (Rogers—Rancho LOS

Amigos)

— Mattress systems (several commercial

models)

— Pressure measuring pad (Texas Institute

for Rehabilitation and Research)

– Rigid-sole rocker shoe (Carville)

— Laser-doppler blood flow meter (University of Washington)

— Low pressure support beds and turning

beds (several commercial models)

● Activities of daily living

— Environmental aids and controls (Prentke
80 . Technology and Handicapped People

Romich, VA, Fidelity)

– Page turners (several commercial models)

● Functional electrical stimulation

— Therapeutic devices and techniques (including biofeedback systems) for lower

and upper extremity management and

stroke

— Pain control devices

— Bladder evacuation and incontinence control systems

— Cerebella stimulation (these devices are

used extensively in some centers).

In addition to the above areas, the following

area is in need of evaluation:

● Communication aids

— Non-vocal communications devices

— Writing systems for severely disabled

individuals.

There are literally thousands of disabilityrelated devices coming out of the public, private,

and nonprofit sectors. Many are relatively simple and low cost items. Others are expensive, complex devices. Regardless of the technology’s cost,

use, or complexity, certain criteria should be

applied and tested before a technology enters

widespread use. The most essential are safety, effectiveness, durability, and recommended applications (65), These baseline assessments are combinations of laboratory testing and clinical evaluations. Many would argue that “life-use” testing

should be an integral part of this process when

a technology is past the initial research stages.

Life-use testing is simply the evaluation of technology in the environment in which it will have

to exist as used by a consumer. There is also an

increasingly active movement toward greater

“consumer” involvement in all phases of disability-related R&D, including evaluation. The major

problem is that defining who the “consumer” is

is not as easy as it would appear. Nonetheless,

the concept is sound and has great potential.

The disabled population, Federal agencies, researchers, and corporations are acutely aware of

the problems and barriers involved in these evaluation issues. An important part of both NIHR’s

legislative mandate and the VA’s program of

Rehabilitation Engineering Research and Development (RER&D) is evaluation and information

dissemination. Part of the RER&D program’s purpose is to work with NIHR in the areas of evaluation, information dissemination, and research

coordination. VA’s legislative mandate requires

that its prosthetic research include testing of prosthetic, orthotic, and orthopedic appliances and

sensory aids (title 38 U. S. C., sec. 4101). It also

requires VA to disseminate the results and information of this program to the benefit of all disabled persons. The separation of the RER&D program from the general VA research efforts had,

in part, the motive of giving focus to the rehabilitation research efforts of VA. This focus has,

in turn, helped stimulate VA to devote more attention to evaluation and information dissemination activities. It should be mentioned here that

NASA’s technology transfer efforts have also

added to the evaluation and dissemination capabilities of the rehabilitation field. Other agencies

such as the Office of Special Education and Rehabilitation Services Administration (RSA) also

are substantially involved with information dissemination efforts.

The major Federal effort in this area is at NIHR,

The reason for this is clear. It is the lead agency

in this field, by law, A sizable portion of the federally supported R&D is funneled through NIHR

to the various research centers. NIHR, via these

centers, is in an advantageous position to decide

or direct, in conjunction with the centers, the level

of resources to devote to evaluation efforts. Evaluation is, or can be, so much a part of the ongoing R&D that some form and level of evaluation effort is, or should be, always present,

NIHR’s 5-year plan states that the areas of clinical

and laboratory evaluation of devices and systems

is part of the proposed future expansion of its

research support efforts (52). In essence, this is

an explicit reaffirmation that formal evaluation

efforts are a necessary and important aspect of

research. Plans, though, are not reality. Therefore, the actual implementation of evaluation

plans should be examined closely over the next

few years in order to evaluate their extent, quality, and impact.

NIHR does not limit its evaluation efforts to

those devices that are produced in its research centers. Innovations from federally funded organizations, private industry, and from abroad are in-
Ch. 7—Evaluation of Technologies . 81

eluded in its testing and evaluation efforts. The

testing done in the laboratories usually focuses on

characteristics such as strength, durability, reliability, technical performance, and specifications

compliance. Later, in clinical testing, items such

as suitability, acceptability, and durability for

specific consumer applications are evaluated.

NIHR has also developed an evaluation plan that

it intends to apply to the testing of: 1) special

classes of products and services for disabled people, and 2) general classes of products with reference to their suitability for use by disabled people. Its evaluation program will do the following

(52):

●

●

select types of products and services to be

tested and compared, based on surveys of

disabled consumers;

obtain samples of products to be tested;

carry out small-scale pilot tests for each

group of products to be tested;

determine product-use patterns;

formulate test protocols;

carry out full-scale physical and use tests;

analyze test results and draw conclusions;

and

prepare and disseminate the findings.

The following three examples of NIHR and research center efforts illustrate the combination of

DISCUSSION

This chapter on evaluation has been placed between those on R&D and on diffusion. That physical placement should not be taken to mean that

evaluation should occur only at that point in the

lifecycle of technologies. On the contrary, evaluation is—or should be—an ongoing and integral

part of the entire lifecycle. In public policy,

however, it is most visible at the late R&D stage.

That is the stage where the drug and device regulation is most intense, and that is when information has to be collected for reimbursement and

financing (i.e., decisions affecting use). The late

R&D stage is, on the average, a good compromise

point in that enough information and experience

may be available for evaluation, and the technology has not yet been widely diffused; at the late

issues and problems that are being addressed. The

New York University Medical Rehabilitation Research and Training Center has ongoing projects

concerned with orthotics-prosthetics, neuromuscular diseases, behavioral science, cardiopulmonary issues, and bioengineering problems. This

center also is affiliated with the Spinal Cord Injury

Center. The West Virginia University Vocational

Rehabilitation Research and Training Center is involved in research on program evaluation, improved service models, programmatic barriers to

vocational rehabilitation, affirmative action, and

consumer involvement, and also maintains the Institute of Rehabilitation Issues. The University of

California at San Francisco Research and Training Center in Deafness and Mental Health conducts research in areas concerning work adjustment as a function of self-image and mental

health, improving clinical training for personnel

working with deaf people, and evaluation of therapeutic interventions for deaf people (55).

These three centers’ activities are limited, yet

illustrative, examples of the diversity of research

and evaluation activities that are being pursued

by the Federal Government in the field of disability-related research. Other examples can be found

in NIHR documents (e. g., 54).

R&D stage, therefore, it may be possible to affect the technology’s future diffusion on the basis

of evaluation.

Many of the shortcomings of evaluation in the

area of technology for disabled people are similar

to those in many areas of policy. Evaluation of

the direct benefits, risks, and costs of technologies

in general suffers from a variety of methodological, funding, and organizational problems.

The weaknesses of assessment of the efficacy and

safety of health-related technologies were mentioned earlier. Comparable statements could be

made in the areas of, for example, education and

transportation. Evaluation of cost-effectiveness

and cost-benefit analyses (CEAs and CBAs
82 • Technology and Handicapped People

especially fraught with methodological shortcomings. In an area where nonquantifiable measures play such an important role, extreme caution should be used in interpreting the results of

these types of analysis. An approach based on

using CEA to structure problems and force the

explicit consideration of assumptions, however,

could be very relevant to evaluation of appropriate use of technologies. This idea is covered more

fully in chapter 11 in its discussion of techniques

for resource allocation.

One type of evaluation that perhaps could be

used effectively in the disability area is technology

assessment, or comprehensive technology assessment, as it is sometimes called. It is a form of

policy analysis designed to provide information

on the range of effects of a technology —e. g.,

social, ethical, legal, political, economic, technical, and psychological effects. Technology assessment uses various methods of analysis and

draws on a wide range of disciplines. Importantly, it takes into account: 1) unintended and unanticipated impacts of technological applications;

2) second and higher order impacts (i.e., indirect

effects or effects caused by other effects); and

3) the full range of parties at interest and the distribution of costs, benefits, and other effects

among them.

Technology assessment is little used in health

care and not much more prevalent in other areas

of technology. Very few assessments have been

conducted in the area of technology for disabled

people. Texas Tech University’s study of rehabilitation technologies is the prime example (76).

The nature of policy issues in this area, however, indicates that there is great potential for

using technology assessment in the disability area.

Some analytical method is needed to address, in

a comprehensive manner, the intricate blend of

ethical, economic, personal, sociological, technical, and legal factors involved in the application of technology for disabled people, Work

would be needed to develop appropriate methods

of analysis for disability-related technologies, but

such efforts might pay high dividends. Because

this type of analysis looks at broad issues of the

effects of technology, it could assist in developing information for allocating resources, an especially important source of problems in the disability-related area.

Not every technological application needs to

be submitted to such analysis, but some warrant

the effort. Systemwide telephone compatibility

with hearing aids, mass transportation system accessibility, sheltered workshops, “mainstreaming”

in education, and artificial organs (e. g., the artificial heart) are illustrative candidates.

There are several classes of users of evaluation

information. As one moves further away from the

technology-specific level of decisionmaking and

closer to the broader social and political decisionmaking levels, needs for evaluation information

change. For example, many levels of evaluation

were and are part of the decision to provide accessible public transportation in urban areas. Political, moral, economic, and legal criteria were

used to decide if, when, why, and how disabled

people should have access to the public transportation system. Once these decisions were made,

the process of designing, developing, and applying solutions to the policy goal was undertaken.

At the policy level, the evaluation criteria were

much different than the criteria at the technical

solution level. At the one end, criteria such as

social equity, distributive justice, ethical considerations, work force economics, political constituencies, and other decisionmaking criteria were

directly or indirectly applied. At the other end,

tests such as performance specification for “kneeling buses, ” transportation scheduling, city or State

budgets, demographic considerations, cost-effectiveness calculations, number of people serviced,

subway retrofitting costs, etc., became the evaluative framework in which the decisionmakers

functioned.

The previous example illustrates the top-down

approach to evaluation. A bottom-up example

might be a communication device that is developed, tested, and found to be of use to a disabled

individual. If its use increases and if wider testing proves the device to be a success, attempts

are made to enlist private manufacturers or investors to put the device into full-scale distribution. At each step along the development process,

the evaluation criteria change to satisfy the information needs of decisionmakers at different levels.
Ch. 7—Evaluation of

-. — .

Safety, efficacy, convenience, usefulness, and durability issues exist at one end, and production

costs, market size, patent rights, liability concerns,

reimbursement, ability-to-pay criteria, and social

goals operate at the other.

Some of the issues relating to evaluation are tied

to the Government-private sector partnership in

bringing innovations to the marketplace. Many

evaluation efforts are in the exclusive domain of

the private sector, yet are related to and dependTechnologies ● 8 3

ent upon the performance of the various Government agencies working in the area of disability-related research. The impression OTA has

gained of this process is that it is not adequately

designed to support fully useful efforts at evaluation and testing. A coherent, adequately

funded, and well-focused program of evaluation

is necessary at all levels of technology diffusion

and adoption. Such a program does not currently exist in the disability-related technology sector.
8

Diffusion and Marketing

of Technologies

Grace is given of God, knowledge is bought in the market.

—Arthur Hugh Clough
Contents

Page

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 87

Current Activities and Programs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 89

Discussion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 95

LIST OF FIGURES

Figure No, Page

5. Stages in the Development and Diffusion of Medical Technologies . . . . . . . . . . . . . . . . 88

6. Organizational Chart for the Autocuer Project. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 91

7. The Innovation Process . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 97
8 ■

Diffusion and Marketing of Technologies

INTRODUCTION

Often, the research, development, marketing,

and diffusion continuum is characterized as being

loosely woven aspects of a single effort. To a

degree, this is correct. However, it is also accurate

to describe the diffusion and marketing aspects

of technology delivery as ones requiring quite different methods, goals, and information than the

research and development (R&D) efforts that have

gone on before. For example, most disabilityrelated researchers (as well as most scientists in

general) have basic research orientations, training, and value systems that focus on conducting

research to further the knowledge in their professional areas (147). As Dr. Goodgold of the New

York University Institute for Rehabilitative Medicine explains (147):

We’re certainly concerned with utilization, but

not from the point that we have a profit motive.

Our profit motive is the advancement of science

while agreeing that there is a need to transform

research ideas in order to increase their acceptance

and put them in a form which decision makers

could understand and accept.

This is a point that is often overlooked in criticism of the performance of the National Institute

of Handicapped Research’s (NIHR’s) research and

training centers (RTCs) and rehabilitation engineering centers (RECs). Their mission encompasses a good deal more than product development and commercialization. In addition to having a commitment to basic and applied research,

these centers are responsible for training new and

existing professionals, delivering services to patients, evaluating research products developed inhouse (as well as those from other RECs and

RTCs), and finally, working with private firms

or organizations to manufacture and market the

R&D products that they have developed. Therefore, it is not entirely fair to measure their success or failure in terms of device development

alone.

Even though R&D, diffusion, and marketing

process can be, and is, broken up into distinct,

but overlapping, approaches, there must still be

a continuity to the process that allows and requires a look at the system as a whole. Any description of the entire process will be deficient in

one area or another. The process is a complex one

whose performance is the result of a myriad of

factors, many beyond the control or predictions

of the scientists, the administrators, Congress, or

the market analysis. At best, a descriptive guide

can be provided to cover the more generalizable

features of the research, development, diffusion,

and marketing process.

Many steps are involved in developing and

marketing a technology. The factors affecting

adoption of innovations are equally numerous

and involved. An organization’s potential for innovation is related to its environment—the econonomic, social, and political factors involved,

the state-of-the-art of technology, and the availability of useful information (216). If barriers exist that impede the flow of information between

the organization and its environment, the innovation, diffusion, and marketing process is hampered. Government (via its programs, incentives,

and regulations) and the firm (using its resources,

personnel, and patterns of communication and decisionmaking) are both responsible for the degree

to which those barriers are overcome and innovations reach and satisfy the demands of the marketplace (216).

Combining the diffusion and marketing models

used to characterize the health care system and

the private sector innovation process may provide a useful guide to the vagaries of marketing

of technologies for disabled people. The disability field provides an example of R&D that is stimulated by personal, economic, social, and political

incentives; funded to a large degree by public and

87
88 . Technology and Handicapped People

nonprofit sources; and then, usually late in the ●

process, grafted onto the manufacturing and marketing systems of the private sector. This forced

marriage is often difficult and unsatisfying to both ●

partners, as well as to disabled people. However,

when this union is successful, it is a productive,

efficient relationship deserving of praise. Figure

5 depicts a typical diffusion pattern for medical ●

technologies (165). This model may be inadequate

for some disability-related technologies, but in

general serves as a useful description of the ●

process.

An ideal, or model, development and diffusion ●

process by which technology would pass through

the necessary stages to reach the consumer is as

follows (164):

discovery, through research, of new knowledge, and relation of this knowledge to the

existing knowledge base;

translation of new knowledge, through applied research, into new technology, and development of a strategy for moving the technology into the delivery system;

evaluation of the safety and efficacy of new

technology through such means as controlled

clinical trials;

development and operation of demonstration

and control programs to demonstrate feasibility for widespread use;

diffusion of the new technology, beginning

with the trials and demonstrations and continuing through a process of increasing acceptance into practice;

Figure 5.—Stages in the Development and Diffusion of Medical Technologies

Extent

human

use

of

Time

L J

Innovation

Basic Applied Targeted First Clinical Early Late Accepted

research research development human trials adoption adoption practice

Basic research Applied R&D and testing

suse )

Diffusion

SOURCE Off Ice of Technology Assessment U S Congress Development of Medical Technology Opportunities for assessment (Washington, D.C U S Government

Prlnting Office August 1976
Ch. 8—Diffusion and Marketing of Technologies . 89

● education of the professional and user communities in use of the new technology; and

. skillful and balanced application of the new

developments to the population.

Muthard cites a number of studies of utilization patterns in the rehabilitative system that were

designed to determine the types of factors that

have been most effective in increasing the chances

of an innovation being adopted (147). Below are

the factors that Havelock has suggested that account for most dissemination and utilization phenomena (105,147).

●

●

●

●

●

●

●

Linkage—reciprocal relationships between

resources and user systems.

Structure—the resource system must plan its

activities in a structured sequence and the

user system must be organized to receive

input.

Openness–the resource system must be willing to be influenced by user needs and expose its new knowledge to inspection; the

user system must actively reach out for new

ideas.

Capacity—both resource and user systems

require the amount of wealth, intelligence,

etc., needed to deal with a given innovation.

Reward—both resource and user systems

need kinds of positive reinforcement or benefits from the innovation to warrant the investment of time, money, and effort.

Proximity—proximity facilitates linkage.

Synergy—several inputs of knowledge,

working together over time, through different channels and formats (purposeful redundancy) facilitate adoption.

The two lists presented above are quite different

in the types of factors involved. The first set is

more a description of how an innovation winds

its way through the process, getting the appropriate and necessary “stamps of approval” along

the way. It provides the framework that allows

the second list of factors to operate. The second

is a list of criteria that explain why a given innovation is used and assimilated into the system.

And obviously the attributes of a technology will

enhance or impede its adoption. According to

Muthard, adoption will be facilitated when a technology is (147):

●

●

●

●

●

●

●

inexpensive;

time-saving;

easy to use;

easy to explain;

easy to understand;

consistent with the consumer’s value system;

and

observable (its workings or effects can be

demonstrated in advance to consumers).

Perhaps implicit in Muthard’s list, and as mentioned in chapter 5, additional factors that could

be included are perceived and actual cost effectiveness, ease of repair, and low frequency of replacement or maintenance.

CURRENT ACTIVITIES AND PROGRAMS

In the process of developing and distributing

disability-related technologies, the public-private

relationship is very complex and close. Each sector brings with it a full complement of beneficial

and negative characteristics. These attributes assist

and impede the process and require the presence

of compromises and insight to make the system

work. Each partner has its own set of agendas,

mandates, and constituencies that it must satisfy.

Often, the organizational goals of the various actors are not even close to being compatible, even

when the basic intentions are similar. Federal

agencies are, among other things, creations of the

political process. The political process has goals

and requirements that are often unique to that

process. Studies, as well as common sense, tell

us—not surprisingly—that private sector firms

tend to innovate primarily in areas where there

is a reasonably clear, short-term profit potential

(216). In an area such as handicap-related innovation, where the market population is ill-defined

and where, on average, the economic status of

 , •
90 • Technology and Handicapped People

users is far below the median, the stimulus for

private investment and involvement is sometimes

very weak.

The imperfections in the existing market structure are numerous. Flaws in public-private sector relationship are equally abundant. NIHR,

along with many others, has identified the major

barriers in both the marketplace and the publicprivate sector relationship (52). That agency is

also attempting to identify solutions to many of

these problems. In the following paragraphs, the

discussion will draw heavily on NIHR’s summary

of both the recognized imperfections and the suggested solutions to these problems. It is worth

mentioning again that the Veterans Administration (VA), the Office of Special Education, and

the National Aeronautics and Space Administration (NASA), among others, are also involved in

efforts to address these same problems. NIHR’s

long-range plan is a fair representation of the

general approach taking place at the Federal level.

Before turning to the negative aspects of this

process and the problems that exist in the publicprivate relationship, it is worth noting a few of

its positive aspects. The Federal Government has

a number of programs in place to provide assistance to the private sector in terms of loans, technical assistance, and information transfer. The

Food and Drug Administration (FDA) imposes

numerous requirements on businesses of all sizes,

but the smaller firms are often hit the hardest.

Therefore, since 1977 it has maintained an Office

of Small Manufacturers’ Assistance (OSMA) to

provide technical help and other nonfinancial assistance to small firms in the device and drug approval processes (22 I). In addition, FDA is instituting a $100 million program to assist smaller

firms financially if they are involved in the rulemaking and administrative procedures at FDA

(221). The Small Business Administration (SBA)

is also involved in making low interest loans to

small, disability-related businesses. Over the

period 1973-81, SBA loaned a total of $116 million

to a wide variety of firms in the United States.

The efforts of VA, NASA, and NIHR have also

produced a number of “successes” in terms of taking R&D products from the Government labs to

private manufacturers for mass marketing and distribution. The introduction of the commercially

produced version of the Autocom, a communications device, is the result of 5 years of initial R&D

at the Trace Center at the University of Wisconsin and 2 years of production engineering at Telesensory Systems, Inc. The Autocom is a example of a prototype device proving the validity of

a research idea and then being “redesigned” to fit

the needs of the manufacturer: 1) mass production, 2) regular production schedules, 3) high

product consistency, and 4) adherence to industrial standards of quality control (189).

Rancho Los Amigos has worked with Med General in Minneapolis to transfer its research on

idiopathic scoliosis to produce a device—the Scolitron—to put on the market. The University of

Michigan REC has also transferred its research on

transportation devices and systems to firms like

Creative Controls, Inc., and the Amigo Corp. for

the development and marketing of mobility technologies to aid handicapped individuals. There

are many examples of where and how RTCs and

RECs have been effective and successful in working with the private sector to transfer R&D prototypes and information to marketable products. *

A good example of how involved and complex

this type of transfer process can be is well illustrated by figure 6, a flow chart of NASA’s efforts

in bringing the technology that became the Autocuer to the marketplace (227). This chart traces

the tortuous route that a single project, involving a not unusual number of actors and organizations, took to get to the commercial stage. This

schematic is a good model for this type of interagency and public-private process. Since most of

the more important technologies tend to follow

*For an interesting account of how the Optacon technology

reached the marketplace, see LaRocca and Turem’s “The Application of Technological Developments to Physically Disabled People”

(LaRocca & Turem, 1978). It was a 10-year project, involving

DHEW, Stanford University, the Mellon Foundation, the Stanford

Research Institute, and finally, the creation of Telesensory Systems,

Inc., to manufacture, distribute, and service the Optacons. More

than $3 million was granted to this project, which came to involve

a staff of 20 to 30 people, while turning out 13 Ph. Ds. and other

advanced degrees for dissertations concerning the Optacon project.

A more thorough analysis of the factors associated with bringing

a device to market can be found in “A Production and Marketing

Strategy for Prototype Devices Developed Under the Rehabilitation

Engineering Program, ” prepared by the Electronic Industries Foundation, March 1978, for RSA (78).
Ch. 8—Diffusion and Marketing of Technologies • 91

Figure 6.—Organizational Chart for the Autocuer Project

I

NASA

Goddard Space

 Flight Center

r I

Biomedical

Application

Team - i

Technology

Utilization Office

1

I

istration J I

I Veterans Administration

 Bureau for Education of RTI

the Handicapped Center for

I

NASA Scientists

 National Institutes of Technology Applications and Engineers

Health

 Food and Drug AdminI

#

allaudet College

Subcontractors 

I

{Subcontractor)

Laboratory

Training and

Testing L

Potential

Autocuer

:turers

Hardware

Development

Software

Development

v

Autocuer

Field Test

Units

I St I

Commercialization

SOURCE. National Aeronautics and Space Admlnlstratlon
92 ● Technology and Handicapped People

.

Photo credit’ Courtesy of Research Triangle Insf/fute, Research Triangle Park, N. C.

The Autocuer, a portable minicomputer, mechanically “hears” words spoken to a deaf person and projects

symbols onto the lens area of a pair of eyeglasses worn by the deaf person. The symbols, shown above

for the phrases “He can go” and “Get a coat,” act as visual cues that lessen the ambiguity of words that

look similar to a lip-reading person

this type of route, the model is an accurate general indicator of how the process works and why

it can succeed or fail.

A major aspect of NIHR’s mandate is to “improve the distribution of technological devices and

equipment for handicapped individuals by providing financial support for the development and

distribution of such devices and equipment” (Public Law 95-602, sec. 200). There are a number of

significant obstacles, however, that complicate

and prevent the participation of private industry

in this process (170):

●

●

lack of adequate demographic data (or

market statistics) about the needs for

technological aids and devices by disabled

people;

lack of commercial viability of certain ventures because of a small fragmented market

and high investment costs; and

. roadblocks caused by the patent system, liability insurance requirements, and the thirdparty payment system.

Additional factors must be considered to the

issues of reimbursement and marketing (see the

following chapter). The Government may provide

a fairly large guaranteed market for numerous

medical and rehabilitative technologies. VA and

the vocational rehabilitation systems alone provide a ready market for medical and rehabilitative

devices. The Government, as purchaser and as

arbiter of performance and design standards, can

to a large extent determine what technologies will

qualify to enter the marketplace. There is some

concern that FDA, the Rehabilitation Services Administration (RSA), and VA accept specification

and standards of existing technologies on the market as the criteria for evaluation and (in the case

of VA and of vocational rehabilitation systems)
Ch. 8—Diffusion and Marketing of Technologjes ● 9 3

Photo credit Courtesy of the National Institutes of Health

An arthritis patient IS being set up to receive radiation treatment from a high-energy X-ray machine. Total Iymphoid

Irradiation IS currentIy being tested for its effect on reducing disability of people with severe rheumatoid arthritis

purchase of new rehabilitative devices (141). This

situation makes it even more difficult for emerging technologies that are different in design or performance levels to enter the general marketplace,

especially the large VA market. If a device can

enter into the “medically necessary” category in

the Medicaid reimbursement process or be included as a necessary rehabilitative device in the

VA or vocational rehabilitation systems, a significant obstacle is overcome for the manufacturer.

Reimbursement is then guaranteed for their product. If a technology is not found to be “therapeutic, “ “medically necessary, ” or does not meet

the standards established by FDA, RSA, or VA,

then the production and marketing outlook is

much less optimistic given the relatively poor

financial status, low employment levels, and illdefined target populations that characterize disabled people as a market.

There are relatively few commercial products

available to disabled people despite the millions

of public dollars dispersed yearly for handicaprelated R&D. A major problem is that the Federal

Government does not have consistent, formal

mechanisms in place to link research investment

to the production and distribution needs of the

marketplace. The exception is a formal mechanism for accomplishing this task within NASA

that works quite well when applied correctly. One

critical aspect of the NASA system is that it

sometimes uses a “co-contracting” process with

both researchers and potential marketers involved. NIHR and VA are trying to move in this

direction, to the extent possible, by redirecting the

development process to accommodate and include

marketplace considerations. NIHR is examining

a number of initiatives to promote and facilitate

private sector involvement (170):
94 ● Technology and Handicapped People

—

● demographic and market research,

● low-cost loans or grants,

● tax incentives,

. studying the experience of European systems,

and

● contracting arrangements.

NIHR is also investigating ways to overcome

the disincentives that have discouraged private

sector involvement, such as patent policy, product liability issues, and the third-party payment

system. Patent policy, for example, is seen as a

disincentive for many firms who are in, or who

might enter, the production of disability-related

technologies. The patent process is expensive and

lengthy. Numerous challenges of patent rights in

court have resulted in a situation of uncertainty

regarding the amount of protection of a design

afforded by a patent. There is also uncertainty

regarding the granting of patent rights to products

or techniques developed in whole or in part by

Federal funds. These considerations are heightened by the fact that a great many firms in this

area are small and cannot easily afford the costs

involved in a lengthy patent process. Additionally, in a rapidly evolving field of technology such

as this, patents may be out-of-date rapidly, thus

lessening the incentives to go through the process

of securing them. Nevertheless, a streamlined and

less costly patent process, combined with a more

consistent and explicit Federal policy toward the

assigning of rights to products developed with

Federal funding, could make some firms less reluctant to enter the market with new products.

It remains to be seen whether this Federal attention will be translated into federally supported

action. One final problem that NIHR has already

begun to address is information collection and dissemination. This is not to say that there is, at present, an absence of disability-related information

collection and dissemination in this country. On

the contrary, there are numerous public and private reference centers, information dissemination

networks, nonprofit organizations, bibliographic

services, etc., that can provide a wealth of information on a wide variety of topics. Nevertheless,

finding product information that is up-to-date,

complete, and accurate remains a substantial

problem.

The most recent addition to the information

collection and dissemination system is the computer network ABLEDATA. This is an NIHRfunded, product information system operated as

a service of the National Rehabilitation Information Center based at Catholic University in Washington, D.C. Most product information is available only through manufacturers’ catalogs or from

distributors. Normally, these data consist of

technical specifications, selection choices, etc. The

ABLEDATA system collects manufacturers’ data

and adds updated information regarding local

availability of products, names of manufacturers,

where the distributors are located, product descriptions, cost information, and any relevant

evaluation data that are available. This information is in a computerized data bank that is accessible to information brokers at selected locations

around the country. These brokers are in turn accessible to rehabilitation centers, individuals, or

anyone who has a need for that information.

Currently there are nine information brokers.

In their searches (for information for clients or

users), these brokers access the on-line data base

as well as conduct manual searches through documents containing information not yet entered

into the computer data bank. As of November

1981, information on 3,200 items was entered into

the system, and another 2,OOO entries were expected shortly. The amount of information that

can be entered is constrained by the limited staff

time available to obtain the information and process it. There are 15 centers, including private rehabilitation centers and NIHR-funded RECs, that

assist the ABLEDATA staff in obtaining manufacturers’ literature. For example, the University

of Virginia is responsible for contributing wheelchair data to the information bank. The University of Michigan submits information regarding

personal transportation technology. The SmithKettlewell Institute contributes data regarding

technologies for deaf-blind individuals. And, New

York University covers environmental technologies for personal use.

The information contributed by RECs will include relevant R&D and evaluation/performance

information they have developed in their program

areas. Surveys of manufacturers, consumers, and
Ch. 8—Diffusion and Marketing of Technologies ● 9 5

other relevant persons, will be conducted to supplement these efforts, as well as to keep the product listings and information current. For each

product, there will be a section for general comments regarding the technology’s use. These comments may include information provided by the

manufacturer but not printed in the product’s literature, suggestions by consumers and professionals regarding modifications that can be made

to the product, and tips regarding the product’s

safe use.

The concept and approach of ABLEDATA are

excellent. However, primarily due to low levels

of funding for start-up and for continuing operations, effective implementation of this program

is likely to be quite difficult. The number of entries is extremely limited, and the comment and

evaluation fields (areas of the forms used) for each

product are currently incomplete, Furthermore,

there is no procedure in place to systematically

update the information. As with the original product entries, the reason for these limitations appears

to be a lack of funding for additional staff time.

They are not due to a lack of need or to the existence of severely limiting technical problems.

Summarizing NIHR’s priority research and

demonstration activities in the marketing and diffusion area also serves the purpose of summarizing the major issues that confront the disabilityrelated development and marketing system in genDISCUSSION

One of the key driving forces usually behind

the innovation process are consumer demands and

needs as perceived by the Government or private

sector. Note that it is not as common for needs

as perceived by the user to be a key driving force.

To a major degree, new scientific or technological

advances and opportunities have also stimulated

important innovations (216).

The obstacles to getting new products onto the

marketplace are many. Booz, Allen & Hamilton,

Inc., found that of every 58 new product ideas,

12 pass the initial screening test, seven remain

after a thorough evaluation of their profit potential, three survive the production stage, two sureral. The research goals and projects identified

below represent the distillation of concerns collected from relevant participants in the field (170):

●

●

●

●

●

Conduct a comprehensive demographic survey of the Nation’s disabled population to

determine the number and the character of

subgroups according to precisely defined impairment and/or functional needs.

Conduct a comprehensive study of incentives

to promote business investment in ventures

that potentially have high social benefit but

which at present are not profitable. Incentives to be studied include: 1) low-cost loans

or grants, 2) tax abatement, and 3) contracting arrangements related to Government purchases.

Conduct a study of disincentives to business

investment including: 1) patent policy,

2) product liability, and 3) third-party

payers.

Establish a testing and evaluation program

(minimum of two centers per year) to assess

suitability of products for use by disabled

persons. This program is to include input

from disabled consumers.

Develop and establish minimum performance

specifications for products. This will offer

producers criteria for manufacturing, and

furnish a framework for testing and evaluation.

vive the test marketing phase, and only one becomes commercially successful (15). Coupling

these statistics with the knowledge that 8 of every

10 new small (general) businesses fail within their

first 5 years makes it apparent that new business

and products (of any type) have very significant

survival problems. These statistics are especially

relevant to the handicap and disability-related

area, since many of the firms that produce technologies in this area are relatively new and very

small, with a fragile capital base and narrow market structure. Businesses and products existing

primarily for disabled persons may encounter additional difficulties due to the sometimes limited

and almost always ill-defined market segments
96 ● Technology and Handicapped People

that characterize this area. These factors also present further complications when a business tries

to raise venture capital to support an uncertain

or risky business proposition. The market demands and needs may be present, but so are a host

of other considerations that make the production,

diffusion, and marketing of innovations quite difficult. Below is a set of actual or perceived reasons

why manufacturers avoid producing disabilityrelated devices (123):

●

●

●

●

●

●

●

the cost of design for production may not be

recoverable;

the cost of special modifications that maybe

necessary in individual situations;

the cost of training that may be involved in

the use of the technology;

the costs associated with assuring that the

technology meets functional, technical, reliability, and safety requirements;

liability and legal concerns (lawsuits due to

malfunctioning devices);

the cost of developing maintenance systems

for technologies whose market potential is

difficult to identify and quantify; and

fear that informed consumer demand, for

better or new products or services, does not

exist.

A dilemma that also adds to the uncertainty of

being a manufacturer in this area is the occurrence

of special problems within existing problem areas

for business. Different populations (e.g., children,

elderly people, active young adults) may have the

same underlying condition or disability, and yet

will not share the same lifestyles, educational

needs, employment aspirations, and so on. Thus,

a technology to assist, for example, a deaf young

adult may have quite different demands placed

on it than one to assist a deaf or hearing-impaired

senior citizen. The specific requirements for an

assistive device will often be quite different. Are

the “numbers” of deaf people relevant to the manufacturer if that firm does not know the subsets

of the market, their various disability levels, and

their lifestyle requirements?

Figure 7 provides more graphic illustration of

the dynamics and requirements involved in private sector efforts to bring research ideas, information, and products to the consumer (147). Diffusion of information is a critical aspect of any

such process. Information transfer needs are found

along the continuum of R&D, diffusion, and marketing. Outlets for information include scientific

journals, meetings, radio, periodicals, computer

networks and data bases, reports, advertisements,

catalogs, television, and books. Despite the extensive array of possible information sources, considerable attention has been focused on the many

weaknesses of the information transfer system.

The complexity of the general research, diffusion, and marketing process is increased by the

special requirements of the area of technology for

disabled or handicapped people. If one examines

just the engineering obstacles of adapting technologies to the human system, the barriers to diffusion seem monumental. The testimony of James

Reswick illustrates the frustration involved in this

process (123):

It is virtually impossible for any one person

clearly to state specifications of a device to meet

a patient’s need in engineering terms. An initial

attempt can be made by an effective team which

includes medical, engineering and the associated

health professionals and technical persons associated with clinical operation and testing. Such

a medical engineering team can set down initial

performance goals and proceed from these goals

to define research and development tasks. Still,

the inescapable fact remains that it is not until the

device is first tried in the clinic on a patient that

many aspects of the problems not recognized in

the beginning become clear, after which it may

be possible to define the specifications in engineering terms.

Inevitably, the first prototype must be redesigned and redeveloped, and it is seldom that only

one cycle of this process is required, Rather, the

process becomes a continuous one, with new and

improved models being worked on and evaluated.

It often is difficult for a developer to accept that

his designs must be frozen for production at a time

when he still is working on various improved versions. But at some point, a manufacturer or other

agency must reach a decision that a product or

a device has attained a level of development sufficient to warrant production and distribution for

profit. It is absolutely vital that this occur if the

firm or agency is to be able to encourage a continuing R&D effort in the first place.
Ch. 8—Diffusion and Marketing of Technologies ● 9 7

.-

IA

/ I

A

o seap(

o

0
98 ● Technology and Handicapped People

Presuming that the manufacturer is successful

in producing a useful biomedical product, he then

faces some additional problems not usually prescribed by a patient’s physician. This means that

physicians must be educated and trained in the

application and use of the devices. Such training

and education are costly and the physician must

be completely sure of the performance of the

device before he can fulfill the ultimate of responsibility which the doctor-patient relationship requires of him. Thus the device development must

occur in the context of a respected teaching-clinical facility if reported clinical experience is to be

considered reliable by the prospective prescribing medical community.

A second problem facing the manufacturer is

the fact that no electromechanical device ever improves with use and age. These devices inevitably

require maintenance and repair, and the manufacturer must assume responsibility for this service.

The establishment and maintenance of such a

service in a limited market may well be too costly to justify. Therefore, many small firms with

limited marketing, distribution, and service capability refrain from producing medical engineering devices even though many have the technical capability and interest.

Additional steps in this process are the premarket approval evaluations required by FDA for

medical devices. The cost of just the process is

considerable. Reswick estimates that the investment required to move a device beyond the prototype stage is as much as four times the original

development costs (123). NIHR places this investment at about five times the original cost of research (51).

The issue of rapidly changing technology is a

serious problem for manufacturers in this field.

Sometimes, though, it can be a benefit as well;

especially in those areas served by or related to

computer and microcircuit technology. Devices

are constantly being made smaller, more sophisticated, more flexible, and cheaper. At the Tufts

RTC, researchers and subcontractors have made

available an Interactive Communicator for use by

nonvocal individuals (147). They never build

more than 10 to 20 devices of the same design.

The technology changes so fast that each year a

new feature is added. As another example, the

Kurzweil Reading Machine had an initial cost of

$50,000, which fell to $25,000; and there are now

plans to reduce the price much further as new

technology and “mass” production help lower its

cost. The problems created by rapidly expanding

technological innovation can be offset by the benefits it helps deliver.
9

Delivery, Use, and Financing

of Technologies

The first of earthly blessings, independence.

—Edward Gibbon
Contents

Page

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 101

Current Activities and Programs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 102

Public Programs. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 102

Income Maintenance. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 102

Health and Medical Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 108

Social Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ... ... . 112

Education Services. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 114

Vocational Rehabilitation and Independent Living . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 117

Nonpublic Programs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 119

Discussion of General Issues . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 120

Coordination and Consistency of Services and Funding . . . . . . . . . . . . . . . . . . . . . . . . . . 120

Gaps in Enrollment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 122

Maintaining Medical/Rehabilitative Device Technologies . . . . . . . . . . . . . . . . . . . . . . . . . 122

Consumer Involvement in Service Delivery . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 123

Shortage of Rehabilitation Providers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 123

TABLES

8. Federal Expenditures for Disabled People Under Selected programs. . . . . . . . . . . . . . . . 103
9

Delivery, Use, and Financing

of Technologies

INTRODUCTION

The desired result of research, development,

evaluation, and diffusion of technologies is the

use of these technologies by disabled individuals.

In order to develop a framework for examining

the fit between the individual disabled person’s

needs, desires, and capabilities and specific technologies, it is necessary to assess the current system of use of technologies, This system includes

selecting technologies, providing technologies,

and paying for them. Assessment of this system

also relates directly to issues of resource allocation.

The use of technologies by disabled people appears to depend primarily, but certainly not entirely, on the public and nonpublic programs and

services for which the individual users are eligible. Through their affiliation with these programs

and services, users either receive technologies directly, have them financed, or learn about them.

“Public programs” are those provided by the governmental sector, whether at the Federal, State,

or local level. “Nonpublic programs” are those

provided by all other sectors of society. The nonpublic (or “private”) sector may be further divided

into the “for-profit” sector (which would include

manufacturers and commercial insurance companies) and the “not-for-profit” sector (which

would include foundations, voluntary health

agencies, universities, and professional associations).

One reason the use of technologies is dependent on eligibility for programs is that many disabled persons are poor. Three-fifths of disabled

adults of working age earn incomes at or near the

poverty level (17). In 1977, the median family income (including public assistance) for severely

disabled individuals was slightly over half that of

the nondisabled (7o). These figures must be kept

in perspective, however, because they may be excluding the many disabled people who have higher

incomes and are thus not in programs from which

much of the data is drawn.

Furthermore, of 15 million disabled Americans

between ages 16 and 64, more than 7.7 million

are either out of the labor force by choice or

unemployed (17).

A second reason the use of technologies is

dependent on eligibility for programs is that information on available technologies reaches potential users primarily through the variety of programs that exist. One type of program provides

the technologies directly, with the professionals

on staff either disseminating information on possible choices or prescribing professionally selected

technologies, training the client in their uses, and

monitoring their effectiveness. Another type of

program serves as an information source for eligible clients.

This chapter describes the significant public and

nonpublic programs that affect the use of technologies by disabled people. Programs legislated

and funded by the Federal Government are emphasized. Because this chapter covers a range of

programs, issues pertaining to particular programs

are discussed following the relevant program

description. Issues pertaining to the service

delivery system as a whole are then discussed separately.

107
102 . Technology and Handicapped People

CURRENT ACTIVITIES AND PROGRAMS

Public Programs

There are many public programs that serve disabled individuals at the Federal, State, and local

levels. These programs vary in their purpose,

origin, definitions of disability, and criteria for

eligibility. Some serve specific disability groups,

others serve all disabled people who meet nondiagnosis-specific eligibility criteria, while others

serve disabled persons through funds earmarked

from broader programs. Programs also differ in

their methods of providing services (which include

alternatives such as funding only, funding plus

referral to services, or direct service provision),

in their financing, and in their administration.

In 1975, the Office of Handicapped Individuals

of the Department of Health, Education, and Welfare (DHEW) surveyed all Federal programs that

serve disabled people, and it found 75 programs

that focused on serving disabled people, 6 programs that were not exclusively for disabled people but emphasized serving them, and 45 programs that mandated serving disabled persons but

on the same basis as able-bodied people (83). A

more recent survey (1981) found 83 programs targeted to disabled persons and 50 that include these

individuals as beneficiaries (122). Thus, in recent

years, the number and diversity of Federal programs serving disabled people has remained fairly constant. These programs are administered by

22 Federal agencies and are concerned with nearly every aspect of a disabled individual’s life. It

should be noted that authority for more than one

program may stem from a piece of legislation.

Although there are over 100 different Federal

programs serving disabled people, the majority

of public services are in the form of: 1) income

maintenance, 2) health and medical care, 3) social

services, 4) educational services, and 5) vocational

rehabilitation and independent living. Other services, not discussed in depth in this report, include

special housing programs and transportation systems. Clearly, the greatest expenditures for disabled people have been and continue to be made

for income maintenance and related transfer payments and health and medical care (8,83,122,130,

208). For most programs, the majority of dollars

come from the Federal Government; Federal funds

are often supplemented by mandatory or optional

State or local matching funds. The Urban Institute

estimated that in 1973, $15.3 billion in public

funds was spent on income maintenance and

related transfer payments, $7.9 billion was spent

on health and medical payments, and $1.1 billion

was spent on other direct service payments (including education and social services) (208). In

1977, these figures increased to $29.8 billion for

income maintenance and transfer payments, $7.7

billion for health and medical payments, * and

$2.4 billion for direct services (8). Thus, similar

proportions of total funds were spent in each area.

In the case of funds spent on children only, the

greatest amount is spent on special education, followed by lesser amounts for transfer payments

and medical care (118). A summary of Federal expenditures for disabled people under the programs

discussed in this chapter is presented in table 8.

Income Maintenance

The major income maintenance programs for

persons with disabilities are the Social Security

Disability Insurance (SSDI) program, the Supplemental Security Income (SSI) program, Veterans

Administration (VA) compensation for service-connected disabilities, and VA pensions for

nonservice connected disabilities.** In fiscal year

1980, Federal expenditures for disabled recipients

were $15.0 billion under SSDI and $3.9 billion

under SSI. ’ * * There were 4.8 million SSDI and

2.3 million SSI beneficiaries (130). For the VA programs, $6.1 billion was spent for 2.3 million vet-

‘Different authors categorize expenditures in different ways, depending on their assumptions and definitions. Thus, it is difficult

to compare figures from source to source, although they may be

useful in examining the magnitude or direction of the spending. In

this case, it is unlikely that medical payments due to disabling conditions decreased from 1973 to 1977, but rather, it is certain that

some programs included in the 1973 figure were not in the 1977 figure. It should also be noted that the latest year for which figures

are available varies from program to program.

* ● State-run worker’s compensation programs are an additional

source of aid to handicapped people. Since these programs are outside of the Federal Government, they will not be discussed in depth.

They operate in all States to provide benefits for work-related impairments or death in the form of cash assistance and/or medical

care (130). In 1977, $5.1 billion was spent for income maintenance

payments and $2.5 billion was spent for medical care (8).

● **These figures exclude administrative expenses.
Ch. 9—Delivery, Use, and Financing of Technologies ● 103

Table 8.– Federal Expenditures for Disabled People Under Selected Programsa

Amount of Number of

expendituresb

beneficiaries

Program (000s) (000s)

Income maintenance

SSDI . . . . . . . . . . . . . . . . . . . . ... . . . . . . . . .

SSI . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Veterans Administration

Compensation. . . . . . . . . . . . . . . . . . . . . .

Pensions . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Health and medical care

Medicare

Related to disabling conditions . . . . . . . . . .

Total benefits for disabled people . . . . . . . .

Medicaid

Related to disabling conditions . . . . . . . . . .

Total benefits for disabled people . . . . . . . .

Veterans Administration

Related to disabling conditions . . . . . . . . . .

Total benefits for disabled people . . . . . . . .

Other programs

Developmental Disabilities . . . . . . . . . . . . . .

Title XX. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Education for all Handicapped Children. ., .

Vocational Education. . . . . . . . . . . . . . . . . . . . .

Title 1, Elementary and Secondary

Education Act . . . . . . . . . . . . . . . . . . . . . . . . .

Handicapped Children’s Early Education

Act . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Vocational Rehabilitation . . . . . . . . . . . . . . . . .

NOTE Numbers from refs 8, 58 122 128, 129 132, 215

$15,000,000 (FY 80)

$3,900,000 (FY 80)

$6,100,000 (FY 80)

$800,000 (FY 80)

$1,400,000 (1977)

$4,000,000 (FY 80)

$2,800,000 (1977)

$3,500,000 (FY 80)

$816,000 (1977)

$3,000,000 to

$5,600,000 (FY 80)

$62,400 (FY 80)

$841,000 (1977)d

$951,000 (FY 79)

$55,000 (FY 79)

$143,000 (FY 80)’

$20,000 (FY 80)e

$1,400,000 (FY 80)

4,800

2,300

2,300

900

3,300 (FY 80)

3,300 (FY 80)

600 to 1,300 (FY 80)

3,600’

Not available

3,900

2,100

222

Not available

1,100

a

These programs Include those discussed In ch 9 Other programs for disabled people, such as those under the Department

of Labor Department of Transport at Ion and Smal I Bu SI ness Adm I n I stratlon, for example are not lnc I uded Generally ex

pendltures under omitted programs are slgnlflcantly lower than those presented

bMany of the dollar and beneficiary figures are estimates rather than actual counts They are also from different years and

sources and should be used to compare magnitudes rather than added to obtain total counts Unless otherwise noted the

year of the beneflc!ary count IS the same as the year for the money spent

cThis figure represents the DD population not the number of beneflc!ar(es Some disabled people who do not meef the crl

fena to be class tfled ds developmentally dtsabled rece(ve services from DD agenctes, ( 184)

‘This figure Includes State funds

‘These flgu res represent appropriations rather than expenditures

SOURCE Off Ice of Technology Assessment

erans under the compensation for service-connected disabilities program (122,215), and $0.8

million was spent for 0.9 million beneficiaries

under the pensions for nonservice-connected disabilities program (130). As will be noted below,

these programs are important for recipients not

only for the income they provide but also for supplemental benefits and referrals to other services.

Both physical and service technologies are provided under the supplemental benefits. The income itself allows the recipients to purchase technologies not covered by the supplemental benefits.

SSDI is a Federal social insurance program for

workers who have contributed to the social security retirement program and become disabled

before retirement age. In order to become eligible for benefits, a worker must have 20 quarters

of coverage in the 40 quarters prior to the onset

of disability and must meet the statutory test of

disability or blindness. Under the statutory test

for disability, the individual must be unable to

engage in any substantial gainful activity (SGA)

due to a medically determinable physical or mental impairment expected to last at least 12 months
104 . Technology and Handicapped People

——..——. —

or result in death (58). If a blind individual meets

the statutory test for blindness, he or she may be

declared eligible for benefits if unable to engage

in SGA comparable to previous gainful activity

in which engaged (213). Once application is made,

there is a 5-month waiting period for receipt of

benefits. Disabled spouses and dependent children

may receive benefits upon the retirement, disability or death of the primary beneficiary.

Individual SSDI beneficiaries receive cash payments with no restrictions on their use. These payments are distributed by the Federal Government

(although eligibility determinations are made by

State vocational rehabilitation agencies) from the

Disability Insurance Trust Fund, which is financed

by a payroll tax. In addition to cash payments,

beneficiaries receive two other benefits–health

insurance coverage under title XVIII of the Social

Security Act (Medicare) and referral to, and thus

use of, vocational rehabilitation services. Medicare coverage begins after 24 months of SSDI payments; funds are transferred from the Disability

Insurance Trust Fund to State vocational rehabilitation agencies. Federal dollars cover 100 percent

of the cost of vocational rehabilitation services

for eligible SSDI recipients. In fiscal year 1979,

$102 million was expended (138).

The SSI program is a Federal cash assistance

program whose purpose is to guarantee needy

aged, blind, and disabled individuals a minimum

income. Although the statutory definition of disability is the same as that under the SSDI program, SSI exhibits an important difference from

SSDI, because eligibility for SSI is based on the

individual’s current status without regard to

previous work or contributions to a trust fund

(83). In order to qualify for benefits, an applicant

must first fulfill the definition of disability, then

pass an income needs test (which, in reality, is

included in the determination of disability), and

must not have personal resources which exceed

statutory limits, Certain children under 18 are

eligible for benefits, but there is no provision

relating to the eligibility of widows or widowers.

The SSI program originated from several State

programs for disabled, aged, and blind persons.

In 1972, the Federal program was enacted; it is

administered by the Social Security Administration and funded out of general revenues. States

may supplement the Federal program by adding

to the Federal cash benefits or by broadening

eligibility limits. This supplemental program may

be administered federally at each State’s request,

in which case the administrative costs are borne

by the Federal Government. If States select this

option (27 have), they must agree to provide supplements for all SSI recipients of the same class

(127).

Like SSDI beneficiaries, SSI beneficiaries receive

unrestricted cash payments. They also receive

numerous welfare-related services, including

health insurance coverage under title XIX of the

Social Security Act (Medicaid), social services

under title XX of the act, and food stamps, Certain beneficiaries may receive vocational rehabilitation services. Finally, beneficiaries who require

care in personal care homes or domiciliary care

facilities may have their Federal SSI or State supplemental payments made directly to their institutions (66). *

Clearly, the method of determining eligibility

for the SSDI and SSI programs greatly affects the

number and severity of beneficiaries and disabilities and thus, use of technologies. As noted earlier, the statutory definition of disability is the

same for both programs, although the basis for

each program is different (one is an insurance program and one is a welfare program). By law, the

definition is meant to be a strict one so that only

the most severely disabled individuals can meet

it (213). It is the regulations rather than the statute,

however, which specify how the definition is to

be applied in individual cases. The State vocational rehabilitation agencies make the initial determination of disability based on medical considerations alone or on medical and vocational

factors.

First, the agency makes a determination of

whether or not an individual is engaging in SGA.

Earnings below $190 per month are considered not

to be SGA, while earnings above $3OO per month

automatically cause a finding of no disability.

● These institutions provide a lower level of skilled care than intermediate care facilities and as such are not covered under Medicare

or Medicaid. Generally, room and board as well as some supervision in activities of daily living are provided.
Ch. 9—Delivery, Use, and Financing of Technologies • 105

Earnings between the two amounts must be evaluated further. If the individual is not engaging in

SGA, a determination of whether or not the individual has a severe impairment-one which

limits his or her physical or mental capacity to

perform basic work-related functions—must be

made. Past relevant work is not considered at this

step. If a severe impairment is found, it is checked

for inclusion on the Social Security medical listings for comparability and duration. At this stage,

as long as the impairment is included in the listings or determined to have a medical equivalent

in the listings, a finding of disability is made. In

cases where the SGA and medical tests do not

point to a clear finding of “disability” or “no disability, ” vocational factors, such as ability to do

past work or adjust to different work, are considered.

According to the Subcommittee on Social Security of the U.S. House of Representatives, there

is good reason to believe that the process of disability determination is not uniform across the

country. Furthermore, there is disparity between

two levels of eligibility determination-the initial

application at the State agency level and the appeal (permitted if a denial is made at the initial

application) at the administrative law judge level.

State agencies are denying benefits to 67.4 percent of initial applicants, yet administrative law

judges are reversing these decisions at a 60-percent

rate, The subcommittee also noted that Federal

supervision and knowledge of the program have

been weakened by a number of executive branch

reorganizations since 1975 (212). A recent General

Accounting Office (GAO) study (95) found a

problem with removing individuals who are no

longer disabled from the SSDI rolls. GAO estimated that as many as 584,000 beneficiaries who

do not currently meet the eligibility criteria may

be receiving benefits.

At the heart of the definition of disability under

SSDI and SSI is the determination of an individual’s ability to engage in SGA. Under SSDI,

although there is no “means test” to determine

eligibility, benefits are terminated if a recipient

earns more than $3OO of counted income per

month. Under SSI, since the program is designed

to guarantee a minimum income, there is a reduction in benefits for dollars earned, It has been

noted that SGA is less than the poverty level and

thus provides a significant disincentive for beneficiaries to work (17,83). Furthermore, the potential loss of supplemental benefits when SGA is

declared, particularly the health insurance benefits under Medicare or Medicaid, provides an additional disincentive to work (17’),

Elimination of disincentives to leave the disability rolls and return to work has been widely discussed in the literature (12,17,68,83,104,130,138,

146,156,213). One suggestion has been to raise the

level of SGA (which has been done periodically

since the SSDI program was enacted), In theory,

a higher SGA level would mean that once a beneficiary was terminated from the SSDI or SSI roll,

because of performance of SGA, his or her earnings would automatically allow financial selfsufficiency. Yet a special study by DHEW of the

increases in the SGA level in 1966, 1968, and 1974

found that these increases were not accompanied

by increases in beneficiary earnings (213). One apparent reason for this finding is that most disabled

beneficiaries’ earnings are substantially below the

SGA level, and raising that level does not increase

those earnings. Another suggestion has been to

increase the wage-to-benefit ratio. This ratio can

be increased by lowering benefits or by improving wages by liberalizing the provisions of the trial

work period (to be discussed below), by improving the performance of rehabilitation counselors,

and by making the labor market more receptive

to the rehabilitated disabled population (104). Improving wages appears to be the preferable method—first, it is more equitable, and second, high

benefit levels are not always the result of SSI or

SSDI benefits. A study of SSDI beneficiaries

showed that in 1971, 44 percent of those receiving SSDI benefits for 1 year or longer also received

cash benefits from at least one other source. Furthermore, the average total benefits paid to those

receiving multiple benefits were double the

amount paid to those receiving only SSDI (146).

The Social Security Disability Amendments of

1980 (Public Law 96-265) attempted to strengthen

work incentives in several ways (68,130). Many

of the law’s provisions affect both SSDI and SSI,

although some apply only to one program. One

provision is that extraordinary work expenses due

to disability—such as those for attendant care
106 . Technology and Handicapped People

services, medical devices, equipment prostheses,

and similar items and services-will be excluded

from the calculations of whether the individual

is engaging in SGA. A second provision is that

a person’s status as a disabled individual will be

extended for 15 months after he or she has successfully completed a 9-month trial work period.

Although the individual cannot receive cash benefits for more than 3 months of the extended benefit period, active benefit status can be reinstated

if the work activity fails or the SGA level of earnings is not maintained. Prior to Public Law

96-265, there was a trial work period of 9 months

after which the beneficiary’s case was closed; new

application and waiting periods were subsequently

applicable.

A third important set of provisions in Public

Law 96-265 relates to health insurance benefits.

Indeed, potential loss of these benefits has been

noted as one of the strongest disincentives to

return to work. Their value alone is often more

than the disabled recipient is able to purchase

through his or her earnings, since the average cost

of medical care is three times more for disabled

persons than for able-bodied persons (17). Public

Law 96-265 extends Medicare coverage for SSDI

beneficiaries for 24 months beyond the automatic

reentitlement period as long as there has been no

medical recovery from disability. Furthermore,

it eliminates the 24-month waiting period for Medicare for persons previously receiving SSDI who

become eligible a second time. For SSI recipients,

a 3-year demonstration program was authorized.

Under this program, people who have completed

the trial work period and continue to earn SGA

receive a special benefit status that entitles them

to retain Medicaid and social services benefits and

in some cases, special cash payments. On a caseby-case basis, the Secretary of the Department of

Health and Human Services (DHHS) is authorized to determine that former SSI recipients require Medicaid and/or social services to maintain

employment or to provide for themselves a reasonable equivalent of SSI benefits. It is too early

to assess the effects of these amendments on

abolishing disincentives to work. A full report by

the Secretary of DHHS to Congress on the effects

of these amendments and on the programs in

general is due by January 1, 1985.

As mentioned above, certain SSDI beneficiaries

may receive vocational rehabilitation services

under the Beneficiary Rehabilitation Program

(BRP), and certain SSI beneficiaries receive such

services under the SSI-Vocational Rehabilitation

(SSI-VR) program. Under both programs, the

services are provided by State vocational rehabilitation agencies and funded totally by the Federal Government (as opposed to the general Vocational Rehabilitation program under which States

must contribute 20 percent). The primary purpose

of funding the two programs is to save trust fund

and general revenue dollars as a result of rehabilitating individuals into productive activity.

Thus, the following criteria were developed for

selecting beneficiaries to receive services (213):

I) the disabling physical or mental impairment is

not expected to progress so rapidly as to outrun

the effect of the vocational rehabilitation services

or preclude restoration of the individual to activity; 2) without the services, the disability is such

that the individual is expected to continue needing

SSI or SSDI payments; 3) a reasonable expectation exists that provision of the services will

restore the person to gainful activity; and 4) the

predicted period of work is long enough that the

benefits saved and future contributions to the trust

fund are greater than the cost of the services provided. These criteria imply that only the least

severely disabled beneficiaries in the SSDI or SSI

program, who by definition must be severely disabled, are eligible for the BRP or SSI-VR programs. Indeed, in fiscal year 1979, there were only

94,936 beneficiaries in the BRP (138) out of a total

4.77 million beneficiaries on SSDI (69).

At issue currently is whether the Federal Government should continue to support vocational

rehabilitation services as part of the income maintenance programs (96,129). One question is

whether the programs are cost effective—i. e.,

whether the costs of services provided are less than

the savings of cash benefits plus the contributions

to the trust fund. A study of savings to the trust

fund using vocational rehabilitation case data and

SSDI benefit histories found the savings to be between $1.39 and $2.72 per $1.00 of cost for SSDI

beneficiaries who completed their vocational rehabilitation service period in fiscal year 1975

(138). The same study found that the cost of voca-
Ch. 9—Delivery, Use, and Financing of Technologies ● 107

tional rehabilitation services would be fully repaid

in 10 years. However, it also found that the loss

of savings due to individuals returning to the SSDI

rolls is substantially greater than the increased

payroll tax revenue received during post-vocational rehabilitation employment. In contrast to

the generally positive findings of the study of the

BRP, a GAO study of the SSI-VR Program (96)

found that the Federal funds spent greatly exceeded reductions in SSI payments. Furthermore,

in 55 percent of cases studied, there were no reductions in SSI payments that could be attributed to

a beneficiary’s increased earnings. Similarly, a

study of disability benefits and rehabilitation services found that persons who receive SSI benefits,

SSDI benefits, or both, are rehabilitated (gainfully

employed and removed from the benefit rolls) less

frequently than nonbeneficiaries receiving the

same vocational rehabilitation services, including

other severely disabled vocational rehabilitation

clients (12). The authors of that study note, however, that many SSI or SSDI beneficiaries who

complete the vocational rehabilitation program

remain on the benefit rolls, because the severity

of their disability may prevent employment in the

competitive market or because the disability benefits reduce their incentives to work.

A second question is whether the current recipients of vocational rehabilitation services under

either the BRP or SSI-VR programs would be able

to receive such services under the general vocational rehabilitation program. The general vocational rehabilitation program is now mandated

to focus on severely disabled persons, which

would include SSDI and SSI recipients. In addition, criteria for selection under the general vocational rehabilitation program are not as stringent,

since it includes independent living as a goal (and

not only gainful employment). However, the

rehabilitation costs for income maintenance beneficiaries are roughly twice that for nonbeneficiaries. Thus, if scarce funds are not earmarked

for those currently in the BRP and SSI-VR programs, there is less chance for those individuals

to be selected for services (129).

The income maintenance programs for disabled

veterans are completely separate from the civilian

programs and have completely different bases for

determining recipients’ eligibility than the SSDI

or SSI programs have. Both the compensation for

service-connected disabilities and pensions for

nonservice-connected disabilities programs are administered by the VA and funded out of general

revenues. There are no State or local supplements

for either program. Similarly, there is no participation by State or local agencies in determination of eligibility.

Compensation for service-comected disabilities

is a program whose purpose is to provide economic relief to veterans whose earning capacity

is impaired due to their military service. The

amount of compensation depends on the degree

of disability which the impairment causes in earning capacity in a civilian occupation. Additional

compensation is provided for dependents. To

become eligible, a veteran first must have contracted a disease, suffered a nonmisconduct injury, or aggravated an existing disease or injury

in the line of duty during active war or peacetime

service. Proof of disability is based on the service medical records. Service connection may be

granted by presumption if a veteran develops one

of the specified chronic diseases within 1 year of

discharge from service, tuberculosis or Hansen’s

disease with 3 years, or multiple sclerosis within

7 years. Once service connection has been established, the percentage of disability is assigned by

VA from an established “Schedule for Rating Disabilities. ” Percentage range from 10 to 100 (215).

Thus, the establishment of eligibility is based

entirely on medical criteria (in addition to proof

of service). No vocational factors are considered

in individual cases. (Vocational factors were considered only when the “Schedule for Rating Disabilities” was developed. ) Furthermore, the individual veteran does not have to show a lack of

ability to earn an income or an inability to support himself or herself with unearned income.

Pensions for nonservice-connected disabilities

is a program to provide an income to totally and

permanently disabled veterans and their dependents whose income is below an established standard. To become eligible, veterans must have

served at least 90 days including 1 day of wartime service, must meet a medical determination

of disability, and must have personal resources

and income below a legislated amount. At age 65,

veterans are deemed to be disabled regardless of
108 ● Technology and Handicapped People

their physical condition. Disabled survivors of

veterans may also receive benefits if the income

test is met (127). As noted earlier, this incometested program is smaller than the nonincome-tested one. Eligible veterans receive cash

payments (the amount is determined by statute),

medical and social services under the VA system,

and housing and education benefits.

Erlanger, et al. (82) note that while distinction

between service- and nonservice-connected disabilities has always been made in discussions on

veterans’ benefits, the legitimacy of veteran pressure for benefits has never been seriously questioned. An examination of the hearings on the

Veterans’ Disability Compensation and Survivors’

Benefits Amendments of 1980 supports this comment (215). The veterans’ disability programs

have always been separate from the civilian programs and have had better benefits and less strict

eligibility requirements. The major issue of concern to policymakers has been the cost of the policy of providing all eligible disabled veterans with

all necessary services (82).

Health and Medical Care

The major publicly financed health and medical

care programs serving disabled individuals are

programs that serve able-bodied individuals as

well. They include Medicare, Medicaid, and VA

medical services. Expenditures attributed to disabling conditions are significant. Berkowitz estimated that in 1977, $1.4 billion was spent under

Medicare and $2.8 billion was spent under Medicaid (8). Another $816 million was spent by VA.

These figures do not represent total medical care

benefits to disabled people funded under the three

programs; rather, they represent only those

medical care expenditures incurred by disabled

persons directly related to their underlying impairments (8). Total health and medical care expenditures (not due only to disabling conditions)

for disabled people under these programs are even

higher. In fiscal year 1980, the Federal Government spent $4. o billion under Medicare for 3.3

million disabled beneficiaries, $3.5 billion under

Medicaid for 3,3 million disabled beneficiaries, *

*State supplements to the Medicaid program are not included in

these figures.

and $3.0 billion to $5.6 billion for 0.6 million to

1.3 million disabled beneficiaries under the VA

medical system (129). As will be discussed further, the use of technologies by disabled people

is significantly affected by the amount of funds

provided by these programs, either to individuals

or providers, by the methods used to authorize

payments, and by the organization of provision

of services.

The Medicare program authorizes health insurance benefits to cover the cost of hospitalization and medical care for eligible elderly and disabled persons, including services by physicians,

some allied health professionals, outpatient clinics, rehabilitation facilities, skilled nursing

facilities, home health agency services, and some

medically necessary drugs and devices (58,208).

As noted in the previous section, individuals who

are eligible for SSDI benefits for 24 months can

receive Medicare benefits. Other eligible disabled

persons include those severely disabled during

childhood who are the dependents of deceased,

retired, or disabled social security beneficiaries,

disabled widows or widowers over age 50 whose

deceased spouses were fully insured, and individuals with end-stage renal disease. Unlike the

determination of eligibility process under SSDI

or SSI during which medical factors, vocational

factors and earnings were examined, eligibility for

Medicare is strictly categorical with the categories

mandated by statute. The determination process

under this program is not as important for the use

of technologies as it is under SSDI or SSI,

although categorical eligibility clearly depends on

the earlier determination process.

Under part A of the Medicare program (the hospital insurance program), participating hospitals,

skilled nursing facilities, and home health agencies (institutional providers) are reimbursed for

the reasonable cost of providing medically necessary inpatient and home care visits. The providers receive the reimbursement directly. Part A

is financed by a payroll tax. Under part B (the

Supplementar y Medical Insurance program), reimbursement equals 80 percent of the reasonable

charge for covered services, including physicians’

services, outpatient physical therapy and speech

pathology services, and other medically necessa~

services, including some drugs and devices. The
Ch. 9—Delivery, Use, and Financing —. -

payments are financed by participants’ premiums

and by general Federal revenues. They are paid

either to the providers directly or to those who

receive the services (58).

The Medicaid program authorizes Federal payments to States to cover the costs of medical care

and related services for eligible recipients. The

program is administered by the State and financed

jointly by Federal and State contributions; the

Federal portion varies according to a formula that

considers State wealth and according to participation in optional parts of the program. Most persons receiving SSI are eligible for Medicaid

assistance (categorically needy). States may elect

to use more restrictive criteria for Medicaid

eligibility than SSI. However, States may elect to

cover other individuals whose incomes are higher

than the SSI maximum but who can not afford

medical care (medically needy); Federal contributions are received for these beneficiaries. Participating States are mandated to provide certain

services, including hospital and physician services,

but they are permitted to provide optional services. The provision of prosthetic devices and

rehabilitation services are considered optional

services. The Medicaid program has emerged as

a primary source of funding for services to disabled people. This is both because the incidence

of disability is higher among low-income groups

and because amendments to the act added specialized benefits for institutionalized mentally ill and

mentally retarded persons (58). The primary example of such specialized benefits is the Intermediate Care Facilities for the Mentally Retarded

(ICF/MR) program. The ICF/MR program was

added to Medicaid in 1%’1 as an optional service; it will be discussed further below.

There are several important policy issues that

affect eligible, disabled Medicare and Medicaid

recipients. First, what technologies are covered

and how are those decisions made? Under the

present coverage mechanism, funds are passed

from the Federal Government to contractors

(called fiscal intermediaries for Medicare, part A,

and carriers for Medicare, part B) who reimburse

the providers. * It is the contractors who are in- —

*The contractors may also reimburse individuals whether or not

they have already paid the providers under the part B program.

However, decisions on what is covered and what types of profesof Technologies . 109

itially responsible for identifying coverage issues

(166), When the contractors feel unable to judge

whether or not to cover a particular service, the

case is referred to 1 of 10 regional offices in the

case of Medicare. If the regional office is unable

to settle the issue, the case is submitted to the central office for a decision. Yet, decisions are often

made on a case-by-case basis and thus may vary

from region to region (or State to State).

Coverage for certain technologies (including

procedures, services, and devices) is mandated by

statute or regulation. For example, necessary curative physician services in or out of the hospital

are covered nationwide. However, many individual technologies are not specifically covered

in a list or set of lists.** Their coverage depends

on determination by the contractor that their use

falls within a category of covered technologies.

For example, prosthetic devices (a category of

technologies) may be covered under part B of

Medicare if they replace all or part of an internal

body organ or replace the functioning of a permanently inoperative or malfunctioning organ

(108), Communication aids, which are considered

by numerous health professionals to be prosthetic

devices, are not specifically covered under part

B (47,108). At present, no agencies or programs

are specifically mandated to fund the purchase of

communication aids (108), although they may be

covered under some programs once precedent-setting cases have been experienced. (See separately issued OTA Background Paper on “Assistive

Communication Aids” for additional discussion

on this topic. )

According to an earlier report by OTA (166),

coverage decisions on a particular technology appear to be based on the technology’s stage of development and its general acceptance. A technology that is perceived to have moved beyond experimental status to clinical application and to be

accepted by the local medical community is considered “reasonable and necessary” and thus is

sions or institutions are recognized as prowders are not aftected by

and do not affect whether or not the pub] ic funds are paid directly

to the provider or to the individual.

* *Congress and the agencies often avoid such l]sts m draft]ng laws

and regulations, because it is very difficult to be comprehensive.

Usually some examples are included followed by phrases such as

“other necessary services” or “other health impaired persons requiring

special education and related services. ”
110 . Technology and Handicapped People

covered if it is not specifically excluded from

coverage. The standards for the criteria used—

stage of development and general acceptance—depend on judgments made on the technology’s

medical safety and efficacy. These judgments are

made by the contractors’ or regional offices’

medical advisors; they may be based on personal

knowledge, on recent literature, or on advice by

advocates of the technology (166). They are rarely

made on the basis of a consistent national policy,

and they vary widely from contractor to contractor (22,166).

Technologies that are covered must then be

deemed “medically necessary” by the medical

community for individual users. Lack of proof of

medical necessity is often a reason for denial of

funding even if the services are necessary for the

comfort or convenience of the patient. Even if necessity is established, contractors do not always

agree with clients and their providers over

whether the need is medical in nature. Consultants

employed to assist the contractors in their decisions rarely have experience with rehabilitation

and do not fully understand its function. As a

result, funding is often denied rather than justified.

This is a particularly important problem for those

disabled people whose needs for services and

devices are not in response to curing a medical

problem (even if it is a disease that has caused their

impairment). Preventive services generally are

also not covered. For example, a new electronic

personal response system for disabled and elderly people that has been shown to be effective,

called Lifeline (196), is not covered by Medicare

or Medicaid because it is considered to be preventive but not “medically necessary. ”

A second issue affecting Medicare and Medicaid

recipients is what types of professions and institutions are recognized as providers, because only

those who are recognized as providers by law or

regulation may prescribe the medically necessary

services. While it may be clear to those outside

the medical community that some technologies

are medically necessary (and thus reimbursed),

the recognized providers may not be the best

suited to match a particular technology with an

individual. The use of durable medical equipment

(DME) may illustrate this point. DME, covered

under part B of Medicare, refers to equipment

that: 1) can withstand repeated use, 2) serves primarily a medical purpose, 3) is not generally useful in the absence of an illness or an injury, and

4) is appropriate for use in the home (116,170).

In 1977, an estimated $73 million to $130 million

was spent on DME (115). Examples of DME include hospital beds and accessories, wheelchairs

and accessories, and canes and crutches. For DME

to be paid for, it must be prescribed by a physician. The prescription must include a diagnosis

and prognosis of the patient’s condition, the

reason for prescribing the equipment, and the estimated duration of medical necessity (116). However, the actual matching of DME to the patient’s

needs is often done by providers such as social

service workers, visiting nurses, orthotics specialists, and others who transmit the pertinent information to the prescribing physician. The carriers

often check claims with these additional providers, and due to the number of individuals who

must be contacted, the claims are up to five times

more costly to process (169). There are, however,

those who believe that the physician prescription

is an important element in getting an appropriate

fit between the technology and user and in obtaining funding (41). Although there are numerous

other reasons for denial of funding, prescriptions

that are not detailed are often initially denied or

referred for followup. Carefully detailed physician prescriptions may, and have, assured funding (41).

Another problem pertaining to the issue of

which providers are recognized for funding is that,

although a class of institutions may be specifically

recognized, the determination of whether an individual institution qualifies as a provider is not

always clear cut. Thus, for example, intermediatecare facilities for the mentally retarded (ICF/MRs)

were mandated as providers under the Medicaid

program in 1971. While the law contained a definition of ICF/MRs, the definition was modeled

on large publicly operated institutions for the

mentally retarded. Initially, it did not specify

criteria for including small publicly and privately funded community residences. Regulations promulgating the ICF/MR program in 1974 stipulated

that facilities of 15 or fewer residents could

qualify, but very little guidance was provided to

States in certifying small community residences.
Ch. 9—Delivery, Use, and Financing of Technologies ● 111

The updated regulations in 1977 were not much

more specific (2).

A third issue affecting Medicare and Medicaid

recipients is the amount reimbursed for the cost

of covered, medically necessary technologies. The

fact that a technology is covered does not ensure

that it will be fully reimbursed. The amount authorized for Medicare or Medicaid reimbursement

may be such that indigent clients needing expensive equipment (and, by definition, Medicaid recipients are indigent) may effectively be denied

access to it (116). A study of DME claims flow

and subsequent payment found that there was

payment of only 52.3 percent of all submitted

charges (116). The reasons for this figure included:

a claims denial rate of 13.4 percent, requirements

for deductibles and coinsurance, and reductions

of the actual charges to allowed charges. The

allowed charge is a result of a comparison among

the actual charge, the customary charge of the individual supplier, the prevailing charge in the

area, and the lowest charge level in the area for

certain specified items (116). The Omnibus Budget

Reconciliation Act of 1981 removed the Medicare

reasonable charge limitations on Medicaid reimbursement. It is too early to assess the effect of

this charge on indigent disabled people receiving

technologies.

A recent GAO report on DME reimbursement

found that standard DME items often cannot be

bought at the amounts allowed and recommended

that the lowest charge level screen be discontinued. That report also found inconsistencies in

the reimbursement and coverage screens used in

different regions of the country. The agency’s recommendation was to make DME reimbursement

policy more consistent (94).

A final important issue is that the Medicare and

Medicaid programs have great influence on the

type and location of services provided to disabled

beneficiaries. Historically, reimbursement policies

have promoted care in institutions both for disabled and elderly persons when coverage of home

care and/or attendant services would have permitted some of those institutionalized to remain

at home (2,14,66). While the current public policy

rhetoric has shifted to a focus on community-based home health care, the policy reality is

that the incentives for institutionalization remain

stronger than the rhetoric. One reason for this is

that Medicare and Medicaid remain physiciandriven medical programs to support curative care

which were not designed to support the social

(nonmedical) needs of beneficiaries (14). Most

disabled individuals do not have a disease of

which they may be cured. Another reason is that

Medicaid eligibility may be easier to obtain when

applicants are in institutions. In 16 States, disabled

and elderly persons living in the community may

not receive Medicaid unless their income is so low

that they receive public cash assistance. These

same persons can receive Medicaid with

somewhat higher incomes if they are in nursing

homes (66). An example may illustrate the incentives for institutionalization. While home health

services are covered under Medicare, they may

be provided only after an acute illness and to those

who need skilled nursing care on an intermittent

basis. This limited benefit is a very small part of

the total Medicare program; in fiscal year 1979,

only 2.1 percent of the Federal Medicare budget

was expended on home health care (14). The home

health aides who provide the service are not generally permitted to do housekeeping or general

chores. Homemaker services, including chores,

may be covered under Medicaid, although only

15 States have elected to do so (66).

VA provides comprehensive medical and rehabilitative services to all veterans with service-connected disabilities and to all veterans with nonservice-connected disabilities who are unable to

obtain or pay for needed medical services (208).

Funding is 100 percent Federal. Unlike the Medicare and Medicaid programs, VA medical programs provide services directly in a variety of VArun settings—including hospitals, nursing homes,

domiciliary care homes, special rehabilitation

centers for blind persons, and rehabilitative engineering and development centers. Priority for

any services is given to veterans with service-connected disabilities. Veterans with nonservice-connected disabilities must prepare a statement declaring that they cannot pay for necessary medical expenses. This statement is used to establish

an income limit for hospitalization, outpatient

care, and nursing home care. Currently, approx-
112 ● Technology and Handicapped People

imately 80 percent of VA patients are veterans

without a service-connected disability (127).

Benefits provided include prehospitalization

care, hospitalization, posthospitalization care,

prosthetic devices, nursing home care, medical

devices, transportation services, domiciliary care,

outpatient medical services, and prescribed drugs.

Unlike coverage decisions under Medicare and

Medicaid, all technologies suited to a veteran’s circumstances and needs are made available (123).

Of course, determinations about circumstances

and needs still need to be made. VA policy is to

provide blind veterans with all necessary services

and devices to overcome their handicap and to

provide other disabled veterans with technologies

deemed medically necessary, As with disability

compensation and pensions, the major issue of

concern to the users and policymakers is the cost

of the policy of covering all available technologies. It should be noted, however, that there are

funding restrictions for some services for veterans

without service-connected disabilities. For example, a foster home program found to be effective

is only available to those veterans who can afford to pay its cost with personal resources (149).

Social Services

Social services programs serve disabled individuals by the direct provision of services, funding

of services, or both, at the Federal, State, and local

levels. The two programs with the highest level

of funding are the Basic Social Services program

authorized under title XX of the Social Security

Act and the Developmental Disabilities program

authorized under the Developmental Disabilities

Assistance and Bill of Rights Act, as amended.

Since the title XX and other social services programs serve the able-bodied as well as disabled

individuals, it is difficult to estimate the expenditures for disabled people under these programs.

Berkowitz provides a very rough estimate of $841

million in 1977 (8). Total program expenditures

were over $2 billion. * In fisca] year 1980, $62.4

million was expended under the Developmental

Disabilities program (122). There were approximately 3.6 million beneficiaries (184). * * Clear-

‘This figure was estimated using the fiscal year 1980 appropriation of $2.7 billion (58).

* *This figure represents the estimated population of developmentally disabled persons.

ly, the amount spent on these services is far less

than that spent on income maintenance or health

care services.

Social services comprise a wide variety of activities, including counseling, guiding, and informing individuals to enable them to use other public and private programs; referring individuals to

other community resources; and providing identifiable services to individuals such as day care,

personal attendant care, legal aid, and meals,

which give them the opportunity to make use of

other programs (208). The funds for social services programs may be used to pay for the programs’ administrative costs, the providers’ salaries, and actual physical objects needed by the

programs’ clients such as speech prostheses. The

receipt of social services has been traditionally

linked to eligibility for public income maintenance

programs as well as some other measures of financial need. Individuals and families not receiving

income from such programs may also receive

services, although fees are usually charged if they

have the ability to pay.

The title XX program authorizes Federal assistance to help States provide social services to

public assistance recipients, including those who

receive SSI. The Federal Government provides 75

percent of the funding (90 percent for family services and 100 percent for a portion of child day

services) up to an appropriated ceiling. The funds

are apportioned among the States on the basis of

population. Within Federal guidelines, the States

may establish eligibility criteria. Thus, while SSI

and Medicaid recipients must be covered, other

needy disabled people may be eligible. The States

have broad discretion to define the services provided under this program as long as they meet

one of five statutory goals: 1) achieving or maintaining economic self-support to prevent or

eliminate dependency, 2) achieving self-sufficiency, 3) preventing or remedying neglect or

abuse of children and adults unable to protect

their own interests, 4) preventing or reducing inappropriate institutionalization, and 5) securing

referral for or providing institutional care when

other forms of care are not appropriate. Certain

activities are specifically prohibited. These include

major construction or renovation as well as

medical or remedial services that can be funded

under Medicare or Medicaid (unless such services
Ch. 9—Delivery, Use, and Financing of Technologies ● 113

are an integral and subordinate part of a broader

service not supported by the medical programs)

(58),

Although the breadth of the range of services

that may be funded under title XX may mean that

some clients receive a comprehensive program,

it also means that providers and clients often need

to learn the intricacies of the regulations in order

to assure that necessary services are funded. This

process is usually quite time-consuming. Another

result of the wide range of possible services is that

clients with similar situations in different States

will receive different care. Finally, the range of

services has resulted in title XX being used to fill

gaps in funding services not completely paid for

under other programs. Examples include radio

reading services for blind people and otherwise

print-impaired people (134), intermediate care facilities for mentally retarded individuals (2,14,39)

and foster home care (66). This use of title XX

funds exemplifies a significant problem in the total

“system” of delivery and use of technologies for

disabled people—a lack of coordination in funding and delivery of services. * Furthermore, reliance on title XX funds to fill gaps in funding can

be problematic, because unlike Medicare or Medicaid, title XX has a closed-end budget (14).

The Developmental Disabilities program authorizes Federal formula grants to States to support planning for services to persons with developmental disabilities. States also receive grants

for the establishment of a system to protect the

rights of developmentally disabled people. In addition, university-affiliated facilities for developmentally disabled persons receive grants to support their operation and administration. Special

project grants to State and local public agencies

and nonprofit organizations may also be awarded.

The current Developmental Disabilities program evolved from the Mental Retardation Facilities Construction Act of 1963. That act initially

provided funds for construction of community-based mental retardation facilities and later

supported the provision of comprehensive services (58). States are required by statute to select

one priority service area out of the following: case

*This problem will be discussed in depth later in this chapter.

management services, child development services,

alternative living arrangement services, and nonvocational social-developmental services. Under

certain circumstances, a second priority area may

be chosen. Services that maybe provided are similar to those authorized under the title XX program. Service activities, as defined by law, include

delivery of services, model service programs, activities to increase the capability of agencies and

institutions to deliver services, coordinating with

other services, outreach, and training of providers

(58). 

Eligibility for services depends on meeting the

definition of developmental disability. Until 1978,

a developmentally disabled person was one with

a substantial disability attributable to mental

retardation, cerebral palsy, epilepsy or other

neurological conditions closely related to mental

retardation that originated before the individual

reached age 18 and was expected to continue indefinitely. In 1978, however, the definition of

developmental disability was changed to shift the

emphasis from etiological categories to functional

impairments. The new definition includes disabilities attributable to mental or physical impairments that are manifested before the person

reaches age 22 and result in substantial functional

limitations in three or more of the following

categories: self-care, receptive and expressive

language, learning, mobility, self-direction,

capacity for independent living, and economic

sufficiency (58).

The change in definition of developmental disability was enacted by Congress after intensive

lobbying by advocates of disabled citizens. While

it is too early to definitively determine the effects

of the change, there have been several significant

occurrences (224,225). First, the original targeted

population has been approximately halved, primarily due to the fact that mildly mentally retarded people are no longer being considered developmentally disabled. Second, the potentially

eligible population has been broadened considerably due to the inclusion of physical disabilities and mental illness under the new definition. As a result, one State (so far) has withdrawn from the program. Another has specifically

excluded chronic mental illness from the definition of developmental disability in the State
114 . Technology and Handicapped People

statutes (2). Third, coverage of some of the services jointly funded under the Developmental Disability and Medicaid programs may have to be

abolished due to the broadening of the definition.

An example is the funding for the intermediate

care facilities for mentally retarded people (who

are developmentally disabled). The ICF/MR program was never intended to cover mentally ill or

learning disabled persons. Thus, not only are

funds insufficient, but the standards are not applicable to the new groups (2).

Education Services*

The two largest programs that provide education services for disabled individuals are authorized under the Education for All Handicapped

Children Act (Public Law 94-142) and the Vocational Education Act. In fiscal year 1979, the Federal Government spent $951 million under the Education for All Handicapped Children Act’s authority for approximately 3.9 million disabled

children. States and local school districts added

approximately $5 billion to that amount (128).

Under the Vocational Education Act, the Federal

Government spent at least $55 million in fiscal

year 1979 for approximately 2.1 million special

education students (132). ** State and local governments provide substantial supplements; in fiscal year 1979, they provided 91.5 percent of the

total funds spent for vocational education programs (132).

Three additional programs, which will not be

discussed in depth, are significant education services programs. * * * Part B of title I of the Elementary and Secondary Education Act (Public Law

89-313) authorizes grants to State agencies operating or supporting schools for disabled children.

*Education services refer to those education services, such as elementary and wcondary education as well as vocational training,

provided and funded outside of the Federal-State Vocational Rehabilitation program.

* *This figure is for fiscal year 1978; it is an estimated figure. Special education students include disadvantaged and handicapped

pupils.

● **While there are many programs that provide education services for handicapped ~ople, the Education for All Handicapped Children and Vocational Education Acts are those that serve the most

disabled individuals. Thus, they were selected for highlighting in

this report. Furthermore, problems and opportunities relating to

those two progmms are characteristic of problems and opportunities

found in other smaller programs.

Federal appropriations for fiscal year 1980 were

$143 million (58). These funds supported over

222,000 children (122). The Handicapped Children’s Early Education Act authorizes grants for

demonstration programs for preschool disabled

children and their parents. This program received

$20 million in fiscal year 1980 appropriations

(122). It has been in existence since 1968. Finally, the Comprehensive Employment and Training Act of 1973 authorizes a number of programs

to assist unemployed persons, including disabled

persons, to develop job skills and work potential.

While there are no programs specifically for disabled people, they were specifically recognized in

the 1978 amendments to the act as a targeted population (58). During the Reagan administration,

it is the training portion of the program that will

be emphasized; appropriations for the employment programs have been substantially cut.

Basic education services for disabled persons,

usually in the form of special education, were considered the primary responsibility of State and

local education agencies until 1966. Congressional

hearings that year revealed that only one-third of

the country’s disabled children were receiving

appropriate educational services. Thus, a new title

was added to the Elementary and Secondary Education Act (the Federal program of grants to

States to support elementary and secondary education for all children) which authorized grants

to States specifically to assist in the education of

disabled children. In 1975, the Education for All

Handicapped Children Act, as amended, expanded the original program to a major multibillion dollar commitment of the Federal Government to assuring all disabled children free appropriate public education in the least restrictive

environment. Since enactment of the act, disabled

children are to receive special education as well

as any related services necessary to benefit from

the education. An individualized educational program (IEP) is mandated for each disabled child

(58). It is these provisions of the act that have significant effect on the use of technologies by disabled children.

The least restrictive environment (LRE) requirement is central to the act’s mandate of a free appropriate education. The concept itself is simple—disabled children must be educated to the
Ch. 9—Delivery, Use, and Financing of Technologies ● 115

—

maximum extent appropriate with nondisabled

children. It is the word “appropriate, ” however,

which makes LRE a complex issue (49), Appropriateness is the factor that determines whether

a child will be educated in the regular classroom

or in another setting such as a special classroom,

a special (separate) school, at home, or in the hospital or institution. The interpretation of appropriateness naturally varies from child to child,

from school district to school district, and from

State to State. In the 1977-78 school year, 93.9

percent of school-aged disabled children were educated in schools serving nondisabled children. Of

those children, over two-thirds received educational services in classrooms along with nondisabled children. The proportion of children placed

in regular schools and the proportion of those children placed in regular classrooms increased slightly over the previous year (49). *

To keep these children in their current placements or to move them closer to a regular classroom, available technologies in the form of aids

and services must be provided. Under Public Law

94-142, these aids and services are entitled “related

services. ” Determining what may be included as

“related services” and who is responsible financially have been very difficult issues and certainly

a source of confusion and long debate for policymakers, providers, and consumers, One reason

for this difficulty is that the law and subsequent

regulations suggest some examples of related services, but the list is intentionally not exhaustive

(222). The examples themselves are not well defined; they include transportation, developmental

and corrective services, speech pathology and

audiology services, psychological services, physical and occupational therapy, medical services

for diagnostic or evaluation purposes, school

health services, social work, and parent counseling and training (194). Decisions on what may be

included under each example category still need

to be made by local and State agencies and, ultimately, the courts. For example, a case on

whether catheterization (a medical service) must

be provided is still being fought in the courts; the

*The increase does not necessarily represent a change in policies

or implementation relating to the least restrictive environment requirement, but rather may represent an increase in the number of

mildly handicapped children served.

current status is that States do not have to provide that service (222). A second reason that

“related services” has been a difficult issue is that

education agencies now have the responsibility

for providing services that have historically been

the domain of the medical community (194), Under Public Law 94-142, a child needing physical

therapy would have that need determined by a

team of educators instead of the traditional physician. In many States, a physician would still need

to prescribe the physical therapy services** (without having first determined the need) and then

have that prescription’s outcome subject to an

educational fair hearing process.

The mandate that each child must receive an

IEP clearly affects the delivery and use of technology, since it is the IEP that details the current

capabilities of the child, the annual and short-term

instructional goals, the particular services to be

provided, and the extent to which the child is to

participate in the regular classroom program. Related services are prescribed in about 13 percent

of the IEPs (49). One issue relating to the IEP that

is often discussed is the cost of its development,

Those who believe it is too costly due to the

number of hours and personnel needed*** argue

that the requirement should be deleted unless

Federal funds are allocated specifically for that

purpose. Others argue that its cost is only too high

if the IEP system is placed on top of the placement and classification systems already in place

and that, ultimately, less professional time

might be needed than under the former placement

systems (128). Another issue relating to the IEP

concerns the methods by which it is developed

(49,171). On one hand, the IEP process requires

a move towards educational programing and use

of related services based on a functional assessment of an individual child’s abilities and disabilities and away from special education classes for

categories of disabled children (such as “mentally retarded” or “deaf”). On the other hand,

● *In these States, the Medical Practices Act does not allow physical

therapists to provide services without a medical prescription (194).

* **A national survey of IEPs found that there was an average

of 4 participants in the development of IEPs, with the greatest number

reported as 15. These participants included representatives of the

school district (usually principals), special education teachers, regular

classroom teachers, physical and ~ or occupational therapists, speech

therapists, school psychologists, social workers, school counselors,

parents, handicapped students themselves, and others (49),
116 ● Technology and Handicapped People

however, the IEP process in its focus on the individual child tends to devote too little time to

an assessment of the child’s environment as a continuing source of the handicap.

While studies of the implementation of Public

Law 94-142 indicate that more disabled children

are receiving a free appropriate education than

ever before (49), there is evidence suggesting that

the congressional intent remains unfulfilled. It

does not appear that all disabled children are being

served. Seven percent of school enrollees are disabled, yet 12 percent of the total school-aged population is disabled (17). (Keep in mind, however,

the frequently inadequate state of data in the

disability area. ) Many of these disabled children

who are enrolled in school remain unnecessarily

segregated in special classes or whole schools (77).

There appears to be a substantial yet undetermined number of children who need but who do

not have access to special education (93). In addition, disabled children are often denied essential related services; in some school districts,

related services provided have been based on what

was available instead of what was needed (49,77).

A number of disabled children are waiting for an

IEP (77). Others are reportedly suspended for

periods of up to 2 years (77). There continue to

be shortages of adequately prepared special education teachers and support personnel (49,128). Finally, while the law guarantees rights to disabled

children and their families, the funds for its enforcement have been called inadequate (16,121).

(See separately issued Background Paper for a

case study on “The Educational Context and the

Least Restrictive Environment” for a more complete discussion of Public Law 94-142.)

The Vocational Education Act, as amended, authorizes a program of grants to States to support

vocational education. While the Federal Government has supported State vocational education

programs since 1917, it was not until 1963 that

the funding structure and legislative language

recognized the needs of special groups, including

disabled people, and not until 1968 that disabled

people were specifically targeted as beneficiaries.

In 1963, the focus of Federal funding shifted from

support of occupation-specific training programs

to support of general planning for and operation

of a wide range of secondary and postsecondary

vocational education programs and auxiliary services (48). This shift allowed States to develop programs that included disabled and disadvantaged

students who had been excluded by virtue of the

types of occupation-specific programs previously provided. Since 1968, 10 percent of each State’s

basic grant funds must be targeted to disabled

students, In addition, Federal funds ($20 million

in fiscal year 1981) are appropriated for special

programs for disadvantaged students (132).

Although specific devices are not provided with

vocational education funds, vocational education

programs are important for the use of technologies

by disabled students, because effective use of technologies in the employment setting is one objective of the education services received. In addition, vocational education programs often serve

as a source of information on what technologies

are available to assist disabled individuals in employment. Evaluation of the effects of vocational

education programs on their students is quite difficult, because many factors other than the program curriculum affect the economic and noneconomic experiences of the students once they leave

the programs (48). One report on the state of the

art of vocational education of disabled students

(112) identified six areas needing improvement:

1) interagency cooperation, 2) personnel preparation, 3) amount of funding, 4) availability of a

choice of service delivery and program options

for disabled students (i.e., regular vocational

education programs, adapted programs with special support services and materials, special education programs, or individualized vocational training in a variety of settings), 5) program evaluation, and 6) delivery of services to Native Americans and other minority disabled youth. Another

report found that it is necessary to look at programs not necessarily designated as vocational

education programs since most special education

courses for postelementary students have vocational content (159).

From a national perspective, there are several

issues of concern regarding the Vocational Education Act and disabled people. Bowe has stated that

vocational education is the most blatantly discriminatory aspect of public education, since only

1.7 percent of those receiving vocational education services are disabled while 10 to 12 percent
of the population eligible by age are disabled (17).

He reported that this discrimination has been due

to a lack of appropriations for monitoring and

enforcing the full access requirements of the law.

Additional factors have been suggested as contributing to the low percentage of disabled

enrollees, including severe shortages of personnel training in both special education and vocational education, limited types of vocational

education programs and service delivery options,

and a limited funding base (112). Another issue

of concern is that the procedures mandated for

the States to distribute Federal dollars to local

education agencies and other eligible recipients are

extremely confusing and, in part, contradictory

(48,132). One set of criteria is used for determining the priority of applicants and another set, similar but not the same, is used for distributing the

funds, This situation exists because the Education

Amendments of 1976, which amended the Vocational Education Act, combined a Senate bill with

a House bill without reconciling them. A third

issue is whether the Federal Government should

continue its involvement in vocational education.

Arguments against continued involvement include

noting that more services are being provided with

a smaller percentage of Federal funds each year.

Arguments for continued involvement include

noting that only the Federal program have required planning for targeted populations and that

relatively small amounts of Federal funds have

been effective in advancing Federal goals and affecting and/or redirecting State efforts.

Vocational Rehabilitation and Independent Living

The stated goals of the vocational rehabilitation system are: 1) to assist vocationally disabled

individuals to enter or return to gainful employment and 2) to assist those individuals whose disabilities are so severe that they do not have the

potential for employment, but who may benefit

from services, to live and function independently. The Rehabilitation Act of 1973, as amended,

authorizes a variety of service, demonstration,

research, and training programs to accomplish

these goals.

The largest program provides Federal grants to

designated State rehabilitation agencies to provide

basic rehabilitation services to disabled persons.

Ch. 9—Delivery, Use, and Financing of Technologies ● 117

—

The Federal Government provides 80 percent of

the funding for the Federal-State program (208).

In fiscal year 1980, $1.4 billion Federal dollars

were spent for 1.1 million beneficiaries (130). Eligibility for vocational rehabilitation services is

usually determined by a rehabilitation counselor,

in consultation with the client, based on meeting

three criteria: the presence of a physical or mental disability, the presence of a substantial handicap to employment, and a reasonable expectation that the vocational rehabilitation services will

allow the individual to become gainfully employed. For each client accepted, an individual

written rehabilitation plan must be developed.

This plan defines the individual’s long-range

employment goal and lists the specific intermediate services to be provided to achieve the goal.

In addition to counseling and guidance, the vocational rehabilitation client may receive physical and mental restoration services; prevocational

evaluation and training; vocational and other

training services, including personal and vocational adjustment services, books, tools, and other

training materials; maintenance allowances during the rehabilitation process; transportation;

services to the client’s family if they are necessary

to the adjustment of the client; interpreter services

for deaf persons; reader, orientation, and mobility

services for blind clients; telecommunication, sensory, and other technological aids and devices;

work adjustment and placement counseling;

placement services; occupational licenses, tools,

equipment, initial stocks, and supplies; and any

other goods and services which may reasonably

be expected to assist in the employment of a disabled individual (58). In essence, then, any technology that can be proven to be of value in preparing an individual for employment or in maintaining that employment may be provided under

this program. The goods and services are provided

by the State rehabilitation agencies themselves,

by other public service agencies, and by private

agencies who serve the general public. They are

paid for out of the Federal-State vocational rehabilitation funds unless the individuals are eligible for support under some other program (208).

An example of another program is the Beneficiary

Rehabilitation Program funded under the SSDI

program.
118 . Technology and Handicapped People

The key issue in the vocational rehabilitation

program is eligibility, since the range of technologies available to and funded for eligible disabled

individuals is clearly extensive and varied. By

mandate, vocational rehabilitation agencies now

must focus attention on severely disabled people.

Yet a possible conflict with this requirement is the

eligibility criterion that requires evidence of a

reasonable expectation that rehabilitation service

will result in gainful employment. In 1975, the Urban Institute (208) found that only 41 percent of

all vocational rehabilitation recipients could be

considered severely disabled. The same study

noted that critics of the system suggest that

rehabilitation counselors select the least disabled

persons eligible to receive services to increase the

number of successfully rehabilitated clients.

Although this criticism has been difficult to test,

it is known that services do fail to reach many

who need them or may benefit from them. Bowe

pointed out that of every 11 individuals eligible

for vocational rehabilitation by virtue of their

disability, only 1 is served (17). The primary

reason behind limiting eligibility for services appears to be a lack of enough appropriated funds,

both Federal and State.

Vocational rehabilitation services for severely

disabled people tend to be provided in programs

at work activities centers, developmental centers,

other sheltered workshops, or at independent living centers. A sheltered workshop may be defined

as a vocationally oriented rehabilitation facility

that utilizes work in a structured, controlled environment to provide evaluation, training, and

employment and is designed to assist disabled persons to move to their optimum level of production (223). Workshops differ in the type of clientele served, the production-rehabilitation orientation, the placement in competitive industry, the

type of goods produced, the consumers to whom

goods are sold, and the capital-labor mix used in

production. Sheltered workshops that provide

services to a number of vocational rehabilitation

clients are largely funded with Federal-State vocational rehabilitation moneys. However, many

sheltered workshops serve clients considered too

severely limited for vocational rehabilitation eligibility (60). Sheltered workshops have been studied extensively. Issues of concern include the dual

role of the disabled person as client and employee

and the resultant problems, funding for construction and operations, the lack of movement of

disabled clients from the workshop to the competitive labor market, the determination of a

proper amount of wages to workshop employees,

the development of a fair yet little time-consuming

process for determining eligibility for the subminimum wage requirement to encourage employment opportunities, and the need to strengthen

enforcement of the Fair Labor Standards Act

(60,98,223).

The Rehabilitation Act also authorizes formula

grants to State vocational rehabilitation agencies

to provide comprehensive independent living

services to those disabled individuals who do not

have present potential for employment. This authority was created in the 1978 amendments to

the act in recognition of the needs of many severely disabled people who were unable to qualify for

vocational rehabilitation services. “Independent

living” is a concept with a variety of definitions,

although the following ideas seem to be important generic components: individuals make their

own decisions and are responsible for their own

lives; individuals are integrated into the community to the maximum extent feasible or desirable;

and individuals have access to support services

in order to maintain independence. Independent

living services are those services that make independent living possible; the kind and amount

necessarily vary from person to person. Housing,

however, can be viewed as a central theme around

which other independent living services and issues

resolve (206). It is included as an allowable service under the independent living authority of the

Rehabilitation Act. Other allowable services include counseling, modification of existing housing, appropriate job placement services, transportation, attendant care, physical rehabilitation,

therapeutic treatment, needed prostheses and

other appliances and devices, health maintenance,

recreational activities, services to children of preschool age, and appropriate preventive services

to decrease the need for future services.

Since the allowable services appear comprehensive enough to permit attainment of independent

living, eligibility for services should be the
Ch. 9—Delivery, Use, and Financing of Technologies ● 119

—

primary issue of concern with respect to the use

of technologies. However, the independent living formula grant authority received no appropriation for 1980. There was $15 million appropriated for project grants to vocational rehabilitation agencies to establish and operate centers

for independent living which provide or arrange

for many of the activities listed above (58).

However, this level of funding does not actually

pay for the necessary services, and centers for independent living must spend huge amounts of

time obtaining other funds. It should also be noted

that the Federal policy of deinstitutionalization

of mentally retarded persons (as discussed earlier)

has increased the need for independent living services (223). Appropriations for this authority may

be needed now more than ever.

Nonpublic Programs

Activities concerned with the delivery, use, and

financing of technologies for disabled people in

the nonprofit and private sectors are numerous

and varied. Since the 1930’s, developing and assuring the delivery of services has been primarily a public (governmental) sector activity. The

availability of public funds in support of public

policies has greatly shaped the nonpublic sector.

Nonprofit and private agencies and organizations,

however, are often the actual service providers

under public programs. In addition, they provide

services and funding not covered by the public

programs.

The major activities in the nonprofit and private

sectors are sponsored by volunteer agencies with

specialized fundraising activities tied directly to

disabling conditions, by fraternal and religious societies, by veterans’ groups, and by self-help and

consumer organizations (83,201). In addition to

service provision, an important function carried

out by nonprofit organizations is the coordination of various public sector programs. Disabled

individuals are often eligible for more than one

public program, yet they do not have the information or the resources to take full advantage of

available services. A number of nonprofit organizations serve as information and resource

brokers, matching their clients with the appropriate public programs.

Private insurance companies provide income

maintenance benefits to certain workers unable

to work due to disability. The amount of benefits

varies, depending on whether the disability is (in

their language) “total” or “partial” and the period

of time for which benefits are payable. The duration of benefits usually depends on whether the

disability was caused by an accident or by an illness. This feature of private disability income protection insurance differs from the SSDI program

under which eligibility does not depend on the

cause of disability. Private disability income coverage is either short-term or long-term. Short-term

policies provide benefits for up to 2 years, while

long-term policies provide benefits for specified

periods such as 5 years, 10 years, or to age 65.

In 1979, 84 million individuals had some form of

disability income coverage. Of these, 66 million

had short-term policies, and 20 million had longterm policies. More than 2 million people had

both types of coverage (107). (These figures include those covered under public progams. ) The

total benefits paid under these programs, although

substantial, are far less than those paid under the

Federal programs. In 1977, insurance companies

paid just over $2.2 billion (106). Disabled beneficiaries of private plans often seek coverage under

the public programs once benefits run out.

Private and nonprofit insurance companies

have traditionally covered disability-related health

and medical care; in 1977, Blue Cross-Blue Shield

spent an estimated $5.3 billion for those expenses.

However, many insurance companies have

avoided or limited coverage of preventable or remedial rehabilitation services under their medical

care policies. One method used to limit coverage

is the exclusion of any education or research costs

performed by hospital staff. Often, rehabilitation

services fall under one of those categories. Reasons

cited for these exclusions include the problem of

defining the eligible populations; the difficulty in

selecting limits to eligibility on an individual basis

once the eligible populations have been defined;

the difficulty in determining cost, cost benefit, or

cost effectiveness of services; the need for new

methods of data collection; the need for an analysis of past experience; and the need for evidence

of meaningful utilization review mechanisms

(143,201).
120 . Technology and Handicapped People

In recent years, an increasing number of companies have become involved with rehabilitation

services coverage. Part of the increase is due to

the efforts of the Insurance Rehabilitation Study

Group (IRSG). IRSG, founded in 1965, is a group

of 50 insurance company executives who are actively engaged in rehabilitation and medical administration. Activities of the group include maintaining awareness of current rehabilitation principles and practices, developing innovative policies, and providing information to the public

(144). Membership is on an individual, not company, basis, but the influence of the members on

their parent companies is continuing to be demonstrated.

In contrast to the slower development of rehabilitation coverage by insurance companies, organized labor benefits have been more comprehensive and have been steadily increasing, especially through the larger labor unions (201).

The volunteer agencies have played a significant role in increasing public awareness of the

problems of disabled individuals, in raising

private funds, in advocating legislation, and in

assisting to provide program services (201). Some

agencies have started handicap industries that

employ severely disabled people. These industries

DISCUSSION OF GENERAL ISSUES

In addition to those issues previously discussed,

there are several others, not related to particular

programs, that affect the use of technologies by

disabled people. They may be arbitrarily grouped

as follows: 1) the coordination and consistency

(or lack thereof) of services and funding, 2) the

gaps in enrollment for public and/or nonpublic

programs, 3) the difficulty in maintaining medical/rehabilitative device technologies, 4) consumer involvement in service delivery, and 5) the

shortage of rehabilitation providers.

Coordination and Consistency of

Services and Funding

A common problem, often raised in the literature and in personal interviews, is that services and funding for disabled people come from

are privately owned companies that compete for

profits in the competitive labor market (profits

usually accrue to the nonprofit agency that established the company) and that employ disabled and

able-bodied workers side by side in the production process (32). An example of a handicap

industry is Center Industries Corp., a manufacturing company founded by the Cerebral Palsy

Research Foundation of Kansas; this company has

often been cited as a model program and company. Furthermore, a study of the economic costs

and benefits of employing severely disabled people at Center Industries found the net benefit per

worker to be positive (32).

Finally, the university centers that provide services and perform research and training can be considered programs in this sector. These include

rehabilitation engineering centers and rehabilitation research and training centers described in

chapter 6 as well as the university-affiliated

facilities funded under the Developmental

Disabilities program. However, the bulk of funding for their activities comes from one or more

of the public programs discussed earlier, and,

thus, their effect on the delivery and use of

technologies by disabled people is largely a function of public policies.

so many different, often uncoordinated, sources

that users and providers are either unable to take

advantage of available technologies or must spend

enormous amounts of time providing the coordination needed to best assist each individual. This

lack of coordination and consistency has meant

that resources are often spent inefficiently and

sometimes ineffectively, Furthermore, individuals

with similar problems do not receive similar

amounts or types of assistance (205). The primary

underlying reason for this lack of coordination

is that the pieces of legislation supporting the

various programs were developed separately (usually by groups of advocates). Each advocate group

usually had different objectives in mind for what

need each program should fill, how it should be

administered and funded, how its services should

be delivered, and whom it should serve. In addi-
Ch. 9—Delivery, Use, and Financing of Technologies ● 121 — — —

tion, Federal policies regarding disabled persons

have focused on limited areas of people’s lives

(e.g., income maintenance or education or work),

and laws and regulations stemming from such

policies have been drafted without enough analysis of their effects on the other areas (39,217).

The definitions of disability, including age limits

used in determining eligibility for services, may

foster the lack of coordination. Most laws define

eligibility based on determinations that individuals

have one or more etiology-specific categories of

impairments (e. g., cerebral palsy, mental retardation, or lack of vision). Thus, two individuals

with different “categories” of disability but who

both need technologies to assist in mobility may

be eligible for different programs, A number of

steps involving several agencies and providers

(and a lack of continuity) maybe taken until the

individuals’ actual needs are met. Some advocates

for disabled persons favor changing the definitions

in the laws or regulations to reflect functional disabilities (as in the current developmental disabilities legislation) instead of categorical disabilities,

in order to remove this barrier to coordination.

These advocates maintain that the presence of

categorical programs causes duplication of effort

and wasting of scarce resources. In addition, it

necessitates labeling of disabled people which,

because of the stigma associated with being “handicapped, ” may then cause their exclusion from opportunities necessary for their full development

as individuals and in society (110). Furthermore,

the existence of categorical legislation helps sustain organizations oriented to one disability that

compete for the limited resources and services

available to disabled people (19,131 ).* Advocates

for cooperation and coordination believe that such

cooperation will assist all disabled people receive

better services. However, attempts to “decategorize” the definitions in current legislation have

been met with resistance from the advocates of

particular categorical disabilities who are well

served by the legislation and who claim that diversity of self-interest is a productive and efficient

approach to obtaining necessary resources (201).

Those who have learned to function well within

*It should be noted, however, that the uni-disability organization~ were ver}’ influenced In the development of the current type

of Ieglslat ion.

the current system are also reluctant for change

(201),

The lack of coordination both causes and is

caused by the structure of the service delivery

“system.” At the overall societal level, separate

systems of service delivery have developed in

areas pertinent to disabled people, such as health

and medical care, education, and social services.

Recent legislation (Public Law 94-142, for example) mandates that eligible individuals receive

assistance from each of these systems, yet professionals within the systems are unaccustomed

to, and thus, reluctant to and/or ineffective in,

working together (200,217). At the level of individual providers, the standard behavior of professional autonomy fosters discontinuous care. Individual providers, particularly physicians, know

little about other resources within the community with which to assist their clients once their services are no longer needed (154).

Funding for the same or similar technologies is

often available under various programs, each with

different rules for payment. This inconsistent and

confusing situation leads to the expenditure of a

great deal of energy and time on locating funding

for individual clients or programs. There are numerous examples of manuals developed on how

to obtain funding for a particular technology.

These are written by researchers, advocates, users,

and even manufacturers (47,134,178,192). Similarly, much time may be spent learning how to

make the most of funding under one program,

given the complexity of the regulations. The title

of a manual to assist program administrators,

Roadmap Through Title XX, provides an illustration of this problem (4o).

Services provided, and eligibility for those services, often differ from State to State, even under

the same program. This lack of consistency hampers the dissemination of information about technologies and how to gain access to them, because

the information is not transferable across State

boarders. DeJong and Wenkler (46) illustrate the

often confusing differences between States

through the example of attendant care services,

a technology needed by all quadriplegic and many

other individuals who use wheelchairs to live independently. Attendant care services are those
122 . Technology and Handicapped People

tasks performed by an attendant in assisting a

severely disabled person with basic activities of

daily living. These services are needed by approximately 2.9 million Americans. Yet because of the

cost, which runs from minimum wage to $5 to

$6 per hour for an average of 6 hours per day,

many individuals cannot afford these services

without public assistance. A citizen of Massachusetts can receive attendant care services if he

or she is over 18, limited in the upper extremities,

psychologically and medically stable, and eligible for Medicaid. Medicaid eligibility is determined by the public welfare department, while

determination of eligibility specifically for attendant care is made by one of three independent living centers. If, in addition to attendant services,

the attendant performs housekeeping services, the

time may be billed to Medicaid. If the citizen were

in Minnesota, however, the housekeeping services

would have to be separately billed to the State’s

title XX program, if the individual were eligible.

In California, all attendant care services, including

housekeeping, are funded under title XX; thus,

only those eligible for title XX may receive publicly funded attendant care.

Gaps in Enrollment

The Urban Institute study (208) noted that quite

a bit is known about those who are served by programs for disabled people, but very little is known

about those who do not receive services because

they fall through gaps in eligibility for public and

nonpublic programs. However, it has been well

documented that gaps exist (82,110,201,205,208).

Indeed, NIHR has as one of its research issues the

development of service delivery techniques to prevent clients from “falling through the cracks” (53).

Disabled people who fall into such gaps may be

those who are multiply-disabled and as such do

not fit neatly into a categorical program (110),

as well as those who by some measure fall on the

wrong side of the border between “disabled” and

“not disabled” under existing program definitions

(e.g., those who earn slightly over SGA or those

whose vision is bad enough to need special devices

and services but who are not quite “legally blind”).

In addition to the problem of gaps due to definitions of eligibility, there are gaps in the provision

of technologies to unenrolled but eligible individuals. This problem appears to be partly due

to a lack of public awareness, partly due to a lack

of outreach efforts to correct it, partly due to the

lack of systematic method to correct it among uncoordinated programs, and partly due to the system’s inability to handle all eligible clients because

of a shortage of funds and personnel (154,201).

Maintaining Medical/Rehabilitative

Device Technologies

Once disabled individuals obtain needed technologies, maintenance can be a serious problem.

The users must be able to obtain parts for their

device, locate skilled repair workers, devise a way

to function while the device is being repaired, and

pay for the whole process. For example, most battery-driven wheelchair users must maintain a second chair for the times when their primary chair

is being repaired, because even the simplest repairs

can take months. In addition, the average powerchair user spends $900 per year in maintenance

and repair fees (141).

Not surprisingly, the difficulty or ease with

which these steps are taken varies from device to

device. Maintenance costs and availability may

depend on whether the device is manufactured by

a large company, by a small company, or nearby, so repairs are relatively easy to arrange. However, these devices are generally prototypes and

thus, more prone to failure, so repair cost and

lack-of-use time may be high. Devices manufactured by small companies often come from far

away; repairs may be hard to arrange locally, and

shipping the device back to the company is costly and time consuming. Users of devices manufactured by large companies generally have the easiest time with arranging repairs. These companies

often establish service centers across the country

staffed by personnel trained in fitting the devices

as well as personnel trained in servicing them

(117). For example, Phonic Ear/Phonic Mirror has

more than 75 locations where their devices can

be fitted (177). All users, however, face the problem of repair costs. Some insurance companies are

concerned about equipment maintenance and

repair and cover these services in their policies.

These provisions vary from contract to contract.

Unfortunately, those with the most comprehen-
Ch. 9—Delivery, Use, and Financing of Technologies . 123

sive policies are often those who receive the

highest disability income maintenance payments.

Consumer Involvement in

Service Delivery

Consumer involvement is as important an issue

in the delivery and use portion of the technology

lifecycle as it is in the R&D portions, because it

is primarily the disabled consumers of technologies who have the level of understanding and experience to ultimately assure appropriate delivery

and use,

The term “consumers” may be narrowly defined

as the disabled or handicapped individuals who

receive a service or commodity from a service program and thus are clients of that program. However, the term may be defined more broadly as

those affected directly or indirectl y by the

rehabilitation system, including disabled clients,

families of disabled clients, former and future

clients, those who qualify as clients by virtue of

their disability but who do not receive services,

and persons who represent the interests of the

disabled (advocates), Consumer involvement currently occurs both at the individual level (see the

narrow definition) and at the program and society levels (see the broad definition), At the individual level, disabled people participate in the creation of IEPs under the Education for All Handicapped Children Act. At the program level, disabled people themselves as weIl as those affected

by the rehabilitation system participate in advisory boards that formulate or affect program policies. Under the Vocational Rehabilitation System,

there are statewide advisory boards composed of

elected representatives from organizations of disabled persons that review the policies of the State’s

rehabilitation agency. At the society level, consumers as defined broadly comprise the National

Council on the Handicapped. The National Council is mandated to review all policies, programs,

and activities concerning disabled persons conducted or assisted by any Federal agency (58).

The preceding examples of consumer involvement were all mandated by legislation passed in

the last decade. They are considered positive steps

by advocates of disabled people, because they

reflect consumer input at a policy level (18).

Previous (and still, in many cases, continuing) approaches to consumer involvement have included

newsletters, public hearings, other methods of informing consumers about public program activities, and use of disabled consultants in preparing annual reports and State plans. These approaches have been called inadequate (18). While

particular programs for consumer involvement

have been neither legislated nor regulated,

avoidance of tokenism remains an area on which

States must continue to focus in developing programs for policy development consultation by disabled persons.

While current legislation and regulations represent advances in consumer involvement in services

delivery, there are several areas that still need improvement. Only half of the State vocational rehabilitation agencies have written plans for consumer involvement. The remaining States need

to develop such plans to assure that the legislative

requirements are being met. A survey by the

American Coalition of Citizens with Disabilities

(18) found that consumer advisers were not

always representative of rehabilitation agency

clients. Mechanisms to assure representation of

the clients served in making policies about services must be developed. Finally, the number of

areas and activities in which consumers are involved must be constantly assessed and broadened

in order that the ultimate goal of consumer involvement—better and more effective services-is

achieved.

Shortage of Rehabilitation Providers

It has already been noted that only those providers recognized by law or regulation may prescribe technologies that are paid for by public (and

most private) funding and that these providers

may not always be the ones best suited to matching particular technologies with individuals. However, another problem is a shortage of these providers, albeit they may not be the desired types.

In the medical area, there are relatively few rehabilitation medicine physician specialists,

(physiatrists*), although specialty medical boards

have existed in this area since 1948. In 1971, there

*This is not a misprint. The term is “physiatrist. ”
124 . Technology and Handicapped People

were close to 1,500 rehabilitation specialists, or

0,4 percent of the 334,ooo physicians in the United

States (150). In 1976, this number increased to

1,715, but the percentage remained approximately

the same (181). The Interim Report of the Graduate Medical Education National Advisory Committee (102) predicts that the percentage will be

the same in 1990. There have been various estimates of need made (150,181) that differ in terms

of assumptions but which all lead to a similar

conclusion—there is and will continue to be a

substantial shortage of rehabilitation medicine

physician specialists through 1990. Estimates for

demand in 1990 range from 4,OOO to 4,9oo, while

estimates for supply range from 3,380 to 2,900.

It should be noted that other physician specialists

do provide rehabilitative care, although there are

no readily available measures of their numbers.

It is usually the rehabilitation physician, however,

who is trained to perform the broadest range of

rehabilitation services, including providing direct

rehabilitative services as well as organizing

systems of care in the community, obtaining resources, conducting research, and providing education on disability (181).

One reason for the low number of rehabilitation physician specialists is that the specialty is

perceived as one with low status, perhaps in part

because of the high proportion of foreign medical

graduates who enter it. In 1976, 65 percent of the

first year residents in physical medicine and rehabilitation were foreign medical graduates (181).

Conversely, it has been suggested that the area

has a high proportion of foreign medical graduates

because it is a low status specialty for “other

reasons, ” and foreign medical graduates thus find

it easier to enter than other areas of medicine.

One of these “other reasons” maybe that a physician in rehabilitative medicine has less control

than physicians in most other specialties owing

to the wide range of other professionals (e.g.,

vocational rehabilitation counselors, occupational

therapists, teachers) who enter into decisions or

whose opinion must be taken into account. Second, medicine is a “cure-oriented” profession, and

conditions that are stable or deteriorating assault

that professional orientation. Third, it maybe that

rehabilitation medicine receives a low priority in

general hospital settings. A study of VA rehabilitation medicine services found that 29 percent of

those services were understaffed in support services. The reason proposed was that the support

staff (nurses, social workers, psychologists) were

under the control of chiefs of service other than

the rehabilitation medicine chief, and those chiefs

may give the rehabilitation medicine services a

lower priority than other services such as medicine

or surgery (149). A final reason for the low status

of rehabilitation medicine is that professional

orientation begins in medical school, where there

are few courses on the management of chronic or

ongoing disability. Basic physician training does

not usually include learning how to refer to

available community resource agencies or how to

assess the need for such services-skills that every

physiatrist uses often.

If the number of rehabilitation physician specialists cannot be increased for the preceding

reasons, alternatives might be to increase acute

care physicians’ skills in rehabilitation or to

develop service delivery mechanisms that depend

more on related health and disability professionals. Training in these skills is possibly best

done during the residency program (because the

medical school program is already lengthy); however, it is necessary that orientation toward

chronic, ongoing conditions begin in medical

school .

There are a number of other types of providers

involved in the provision of goods and services

to disabled people, including physical therapists,

speech therapists, occupational therapists, rehabilitation counselors, vocational educators, rehabilitation engineers, independent living center staff

(e.g., peer counselors), orthotic and prosthetic

technologists, and social workers. These allied

health providers are often paid by institutional

providers, including State vocational rehabilitation agencies, education agencies, comprehensive rehabilitation centers, hospitals, etc., recognized under one of the funding authorities.

While the number of allied health professionals

has increased dramatically over the last 30 years,

a shortage remains (60,150). The shortage based

on needs as perceived by disabled people is difficult to quantify precisely because demand figures
Ch. 9—Delivery, Use, and Financing of Technologies ● 125 —

include estimates of demand from individuals who Children Act and the Developmental Disabilities

would not be included as “disabled. ” However, Amendments of 1978 become more apparent, the

it is predicted that as the implications of legisla- demand for and the shortage of allied health pertion such as the Education for All Handicapped sonnel will increase (60).
10 ●

Developing and Using

Technologies: Conclusions

From Part Two

Life is the art of drawing sufficient conclusions from insufficient premises.

—Samuel Butler
10.

Developing and Using Technologies:

The preceding chapt ers have discussed the process of developing and using technologies: A need

is recognized or an idea for a technology arises,

basic and applied research takes place, testing and

evaluation occur, a marketing or distribution plan

is developed and implemented, reimbursement or

financing methods are determined, use of the technology begins and spreads, widespread use is attained, and eventually (perhaps) obsolescence or

disuse sets in. This description of the process, as

discussed earlier, is extremely simplistic and idealistic when compared to reality. Nonetheless, it is

a useful and important way to examine reality and

the performance of the system’s actors. The order

and the exact content of each of the steps in the

process are not as important as the conceptual and

practical connections between the steps. These

connections are as critical in reality as they are

in the ideal.

OTA’s examination of the current situation

leaves little doubt that the disability-related

research, development, evaluation, diffusion, and

marketing “system” suffers from a number of significant weaknesses. This system is capable of,

and has produced, important contributions to disabled and nondisabled people. It definitely has

had success stories, stories that frequently have

been due to the dedicated efforts of individuals

rather than to the thoughtful application of effective governmental or private systems of development and diffusion. Despite these successes, the

system is, or could be, capable of a great deal

more.

The high level of expectations that has been

placed on this collection of public, private, and

nonprofit organizations is not unreasonable. This

system should be held responsible for reaching the

goals that have been set for it. This is an area of

high expectations for the simple and obvious reason that the technologies and services are critical

to the consumers who use them. Very often, there

are few or no alternatives.

OTA finds that there is

Part Two

a crucial lack of attention being paid to the concept of appropriate use

of technology. This implies that research and development (R&D) often proceeds without an adequate appreciation of its role in assuring the existence and the diffusion of appropriate technologies. Appropriately used technologies can be

simple or complex, manual or electronic, expensive or inexpensive. The key point is that they

should be the appropriate technological response

to a defined set of needs, desires, and capabilities,

taking into account resource constraints. Whether

the simple approach to analyzing the appropriateness of technologies as suggested in chapter 5 is

the preferable or most effective way to move

closer to appropriate development and use of technologies is not important. The critical aspect is

that considerable attention needs to be given to

the creation of analytical methods for determining and attaining appropriateness. The conclusions that are set out below regarding the more

specific problems of the R&D, evaluation, diffusion, use, and financing processes emerge from

this concept of appropriate development and use

of technology. The discussions and conclusions

on resource allocation that follow are similarly

dependent on this concept.

The issues and problems discussed in the preceding chapters are not new, nor are they being

pointed out for the first time, although the emphasis on a lifecycle approach to appropriate

technology has received inadequate attention. In

fact, one of the more perplexing and frustrating

aspects of a review of the relevant literature is that

the same problems reappear year after year in

report after report, hearing after hearing, and

seminar after seminar. The problems continue to

exist despite the efforts of dedicated individuals

and organizations and despite government reorganizations, new legislative mandates, new research plans, and the continued expenditure of

substantial funds.

129
130 ● Technology and Handicapped People — .

Money is, as always, a problem. In real terms,

the Federal and State commitment of funds for

disability-related R&D has been declining for the

last decade. That trend is likely to continue. Funding is and will be an ever present problem. Increased funding for R&D would definitely help,

but at the same time it should be recognized that

more money will not in itself solve all problems.

There are a number of reasons for the above

conclusions. As the White House Study has

pointed out (226):

The development of new technology and the

adaptation of existing technology for the handicapped have been hampered in the past by inattention to the definition of discrete, project

oriented tasks, by the lack of a suitable basic

science to support the managerial decision processes required, by a scarcity of people trained and

educated in the application of engineering principles to the handicapped, and by the high cost

of technical failures induced by non-perception

of real needs.

Obviously, few, if any, of the above problems

would be totally remedied by the application of

increased funds to the existing system. The nonperception of real needs is a reflection both of low

levels of funds available and of a lack of perspective and sensitivity. In fact, the concept of

need could be expanded to a blend of needs,

desires, and capabilities. The user, the disabled

individual, must be more involved in the defining of those characteristics. Even when addressing only the needs aspect of the three, the “real”

needs of users must be distinguished from needs

as perceived by researchers or others. The identification of needs, desires, and capabilities has

to be strengthened both conceptually and methodologically, as discussed in chapter 5. When

identification and assessment of disabilities and

handicaps are performed with the user as a full

participant and with the goal of developing effective plans for applying technologies appropriately, one byproduct will be the creation of data

that can and should be used in directing future

research—especially applied R&D.

Increasingly, the public is expressing disappointment and dissatisfaction with the rate of application of research results. OTA researchers

were frequently told that the capability and resources to develop technologies that will benefit

disabled people do exist, and further, that there

are existing technologies that could be made much

more widely available. Yet, currently only a fraction of disabled individuals are adequately benefiting from this capability (123). Much of this

capability is in, or has come out of, the federally

sponsored disability-related research system. The

rapid pace at which the private sector is producing innovations is also adding to the list of technologies that could have significant benefits.

The public, especially those members with disabilities, has been witness to significant accomplishments of the government-private sector relationship, specifically in those instances when

public policy has complemented private sector incentives and when actions at each step of the technology’s lifecycle have been consistent with actions at the other steps. These have been exceptions. In general, public and private policies are

not established with lifecycle consistency in mind.

OTA believes that there has not been a full-scale

attempt to address the range of lifecycle issues

through an explicit consistency of policy. Certainly, other observers have noted the importance of

considering the effects of R&D on marketing or

of reimbursement on diffusion. And yet there are

only beginning efforts to modify policies in line

with a comprehensive perspective. Such efforts

do not have to cost large amounts of additional

funds, In this area, foresight is more important

than finances,

There are a number of other issues that need

to be resolved concerning Federal agencies’ approach to the lifecycle of technologies, especially at the R&D and diffusion stages. There appears

to be a historical imbalance between, on the one

hand, the emphasis on basic and applied research

and, on the other, on the diffusion or marketing

of technologies and the dissemination of information. Both the National Institute of Handicapped

Research (NIHR) and the Veterans Administration (VA) are moving toward (on paper at least)

a greater emphasis on these latter activities. The

generation of research reports and the development of prototypes are unacceptable end-points

for the federally supported disability-related R&D

process. However, efforts to support more infor-
Ch. 10—Developing and Using Technology: Conclusions From Part Two • 131

.

mation dissemination activities have been slow

to catch on and are underfunded. The efforts to

enlist more private sector involvement in the

transfer of research results into marketable devices

have also been sporadic and of mixed results.

There is a need for a strengthened public-private

sector partnership in marketing new technologies

for disabled people. Companies that are interested

in marketing such technologies should be encouraged and assisted to do so. Small private firms

often have the capacity for developing innovative

technologies yet lack the means to identify and

reach those people who might benefit from their

products. The cost of performing marketing surveys is usually large when the potential market

is small, as it is with many segments of the population of disabled individuals. More importantly,

the state-of-the-art of identifying (for marketing

purposes or for public policy purposes) disabled

individuals and populations is not advanced

enough to consistently or even frequently provide

valid and usable data.

Another marketing need is research on how

technologies for disabled people can assist nondisabled people. Examples of such technologies

often cited include ramps and curb cuts designed

for wheelchairs that assist senior citizens, bicyclists, and people with baby carriages, and

computer-assisted communications devices that

may be applied to computer systems used by nondisabled people. A large-scale demonstration program, or even better a series of small-scale programs, on multiple uses of technological developments might help in fulfilling this need.

Public and private agencies involved in the disability-related R&D process have devoted a very

small portion of their resources to any type of

evaluation or monitoring of research programs

or resulting technologies. Performance testing or

evaluation is not pursued to any significant

degree.

The disability-related R&D system has a

tendency to focus its energies and attention on the

“gee whiz” technologies. The “sophisticated,” and

usually very expensive, approaches seem to consume a major portion of both the public and private sectors’ efforts. In a recent article announcing the opening of the new VA Rehabilitation Engineering and Development Center at the Palo

Alto VA Medical Center, the world was served

notice that: “The new center will put ‘Star Wars’

technology directly into helping the human being”

(158). One needs only to open a current periodical

or science magazine to discover accounts of “hightechnology” innovation related to disabilities.

However, when workshops or surveys of disabled

consumers are conducted, a very common and

important suggestion is that more emphasis

should be put on the development of less sophisticated, more easily repairable, easier to use,

cheaper technologies or approaches. As one professional has commented (147):

You wouldn’t want to spend $1,000 on a piece

of equipment that would be used on only 5 percent of the job tasks . . . It would be more practical to see if you could restructure the job tasks.

The same questions need to be raised in other

situations. Is it feasible or desirable to spend a certain amount of dollars to achieve 95- to 100-

percent efficiency when half or less of that amount

would produce 60- to 80-percent efficiency;

enough to handle most of a person’s needs in a

given situation? All too often it appears that the

research system becomes infatuated with the most

technically sophisticated approach to attaining

100-percent efficiency. Alternative research strategies and goals need to be seriously considered

and supported.

The need for information dissemination is just

as great at the delivery and use stages of the technology lifecycle as it is at the R&D, evaluation,

and marketing stages. Only with the best possible

information can an individual’s needs, desires, and

capabilities be appropriately matched with available technologies, Perhaps more important is that

only with complete information on what technologies are available (on the market), how they

perform, how they may be obtained, and how

they may be funded can the best use be made of

limited resources. Yet many of the numerous

parties-at-interest, such as users, providers, and

third-party payers, who need such information

have only small parts of it available. Thus, the

decisions made that result in an individual’s use

or disuse of a particular technology are often

desirable only on a short-term basis,
132 ● Technology and Handicapped People

Much of the dissemination of information on

available technologies currently occurs through

publicly financed or publicly operated programs

for disabled people. One result of this is often that

individuals outside of the public service delivery

systems, by virtue of their independence or their

noneligibility for service programs, lack access to

necessary information. A mechanism is needed

whereby individuals who are capable of applying their own resources to purchasing technologies

can find and use the information that is available.

One mechanism is the use of an entry point into

service delivery such as the State vocational rehabilitation agency.

Another result of the current method of information dissemination is that the systems for information dissemination that exist are confined

to discrete subject areas. This is in part because

of the multitude of uncoordinated and overlapping public and private programs. The average

consumers and providers of technologies need information in many related subject areas. Currently, either this information is not obtained or

substantial resources must be expended to obtain

it. OTA believes that strategies for coordinating

information on the delivery and use of technologies for disabled people should be supported. It

is imperative that new policies in this area reflect

a coordinated information dissemination effort,

regardless of the (often low) degree of coordination in the legislated service programs.

Because most technologies used by disabled

people are either paid for, directly provided by,

or learned about through public and nonpublic

programs and services, those who are eligible for

the programs and services are generally those who

have access to the technologies. Thus, decisions

regarding who should be eligible and how eligibility should be determined are major determinants

of the use of technologies. Boundaries to eligibility

and methods for its determination in individual

cases differ from program to program. Eligibility is most often determined by establishing the

presence of an etiology-specific category of impairment, by finding a mental or physical impairment that results in a functional limitation, or by

a combination of both methods. A common result

of having a variety of methods is that individuals

in similar situations receive different amounts and

types of services. Services that are necessary may

not be received, and those that are received are

likely to lack continuity. Increasingly, public programs are moving toward determining eligibility y

on the basis of evidence of functional manifestations of physical or mental impairments, so that

those who most need services may receive them

and so that the services they receive are appropriate and provided in a coordinated fashion.

Advocates for disabled people with specific categorical impairments who are served well by the

earlier type of definition, however, are reluctant

for changes to be made. It is unclear which type

of definition, if any, can guarantee the most appropriate use of technologies, although ideally one

based on function should be preferable.

Providing individuals with technologies requires the resolution of several policy issues. One

issue concerns the type of provider needed to

match the technology with the user. Traditionally, physicians have done most of the prescribing of device technologies, partly because disabled

individuals most often receive their first services

through the medical system and partly because

the major third-party funding programs often will

only pay for items that carry a physician’s prescription. It is clear that physicians are best qualified to prescribe certain technologies, particularly

many of those that are for medical purposes.

Many technologies, however, are applied for purposes other than strictly “medical” ones, and there

are other providers who are equally or better qualified than physicians to select the best technology

for their client. Yet these providers, including

rehabilitation engineers, occupational therapists,

and special education teachers, as well as users

themselves, usually cannot obtain public funding

for the technologies. For example, the NIHRfunded rehabilitation research and training centers

(RTCs) are designed to develop innovative technological solutions to problems of disabled people. But even if RTCs are able to disseminate this

information, those who receive it may be unable

to apply it to their clients. Therefore, strategies

for encouraging the use of various types of providers could be developed, These may include

changing reimbursement policies as well as changing licensing laws or physician education curricula. It is important, however, that any provider
-

Ch. 10—Developing and Using Technology: Conclusions From Part Two . 133

prescribing technologies have specific training in

the relevant disciplines,

Another issue concerns the criteria for selecting

a particular technology once the type of technology and its purpose have been decided. Effectiveness and cost have typically been the criteria

used in the past. Certainly, they are the ones cited

formally most frequently. These criteria are indeed important, yet they are insufficient for selecting technologies for people who will likely need

assistance for most of their lives. OTA believes

that users and providers alike must consider obsolescence, maintenance, and actual procurement

of devices to be important criteria. With the rapidly advancing technological capabilities of our

society, most technologies developed today will

necessarily become obsolete sometime in the

future. Providers must assess the predictable rate

at which obsolescence will occur and use that information in making their selection. For maintenance, the frequency, the time taken, and the cost

must be considered. For actual procurement, the

location of the manufacturer in relation to the

location of the client must be considered. Federal

policies do not encourage the formal consideration of these criteria. Even though decisions utilizing these criteria may be based on individual preferences (e. g., for easy maintenance over distant

obsolescence), there are few mechanisms for allowing individual users’ desires to be taken into

account.

A third issue concerns the structure of the systems under which individuals receive technologies. A common problem, discussed in several

sections of this report, is that services and funding for disabled people come from so many different, often uncoordinated sources that both providers and users often are unable to take advantage of available technologies, Reasons for the

lack of coordination include the methods by

which existing legislation was developed, the

definitions used in determining eligibility, and the

fact that disabled people need assistance in so

many different areas of their lives—areas that

have entire social systems designed specifically for

them,

As noted earlier, money is a problem in the

technology lifecycle, particularly in the areas of

delivery and use. Simply put, there is not enough

to provide all technologies to all people who need

them, even if need is defined very narrowly. Thus,

the way in which money is applied has important consequences for the use of technologies—

what is used, how long it is used, where it is used,

and for what purpose it is used. Money applied

in one area of technologies usually means that less

is available for other areas, Decisions on resource

allocation are thus perhaps the most important

ones that need to be made by society’s policy makers. These will be discussed in Part Three. However, decisions on how to allocate resources

among programs for disabled people and between

programs for disabled people and programs for

nondisabled people cannot be made without an

explicit understanding of the effect that funding

decisions have on individuals. These effects must

be clearly described when new programs are

developed.
Part Three:

Resource Allocation
1 1 .

Resource Allocation;

Issues and Conclusions

Give a man a fish, and he will eat for a day. Teach him how to fish, and

he will eat for the rest of his life.

—Chinese proverb
Page

Patterns and Forces in Resource Allocation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 139

Resource Allocation Decisions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 141

Levels of Decisionmaking . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 142

Allocation Versus Spending . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 142

Substantive Area of Decisions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 143

Current Issues in Resource Allocation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 143

Eligibility Determinations and the Definitionof Disability and Handicap . . . . . . . . . . . 143

Categorical Orientation of Allocation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 145

Issues of Resource Allocation and Independent Living . . . . . . . . . . . . . . . . . . . . . . . . . . . . 146

Outcome Measures Used in Resource Allocation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 146

Prevention of Impairments and Disabilities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 147

Resource Allocation and Elderly People . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 149

Analytical Methods for Informing Decisionmaking . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 150

Role of Analytical Techniques . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 150

Range of Analytical Techniques . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 151

Principles of Formal Analysis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 153

Structuring Resource Allocation Decisions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 153

Explicitly Define the Problem . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 153

State Goals immeasurable or Evaluable Terms . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 154

Specify the Range of Parties at Interest. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 154

Identify the Range of Possible Decisions. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 154

Identify, Measure, and Value Potential Consequences of Decisions . . . . . . . . . . . . . . . . 155

Consider the Effects of Time (Discounting) and Uncertainty . . . . . . . . . . . . . . . . . . . . . . 155

Consider Ethical and Other ’’Nonobjective” Factors . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 157

Provide for Evaluation of the Results of Decisions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 157

LIST OF TABLES

Table No. Page

9. Comparison of Decision Levels and Decision Variables . . . . . . . . . . . . . . . . . . . . . . . . . 142

10. Ten Principles of Formal Analysis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 153
1 1 .

Resource Allocation;

Issues and Conclusions*

The previous chapters have sought to make two

critical points: that the development and use of

technologies for disabled persons are greatly affected by available resources, and that, in turn

the efficient and effective allocation of resources

depends on an appreciation of the powerful role

played by technological capabilities and limitations. Efforts to improve resource allocation must

take into account the controls and incentives currently operating on the development, evaluation,

diffusion, and use of technologies.

This chapter focuses on the allocation of resources. It briefly mentions the historical and current forces that have shaped patterns of resource

allocation, presents conclusions relating to several

key policy issues, and then discusses a method for

structuring decisions.

PATTERNS AND FORCES IN RESOURCE ALLOCATION

Current public policy toward disabled persons

has evolved over the last several decades in complex and unpredictable ways. At bottom, however, the process of policy formation in this area

can be viewed as a long series of decisions concerning the allocation of resources to and among

disabled individuals in our society. Frequently,

these resource allocation decisions are expressed

in laws and regulations governing who should receive what kind of assistance. For the most part,

these decisions have been made by nondisabled

people, often with little or no input from disabled

people. Income subsidies, medical treatment,

vocational therapy, affirmative action, special

education, and other social services are examples

of the kinds of assistance proffered. Such assistance constitutes the resources potentially available

to disabled individuals. Which individuals actually receive particular resources is the essence of the

allocation decisions determined by statutes, program regulations, definitions of disability, need

standards, and the like. Both the resources available and the allocation decisions are means to accomplish a given purpose intended by a decisionmaker.

‘Parts of this chapter are based on material prepared for OTA

by Tom Joe, Cheryl Rogers, and John Nelson of the Center Ior the

Stud} ot Social Policy, Un]verslty of Ch]cago, and by Nlarh Ozer

ot the George Washington School of !vledlcl ne

In the 19th century, the United States was a rapidly expanding country with an unlimited frontier and a predominantly agricultural economy.

The virtually unrestricted opportunities offered

by a rapidly growing population, an abundance

of rich natural resources, and vast areas of available land helped mold the American tradition that

through hard work, initiative, and thrift, each individual should provide for his own needs and

the needs of his family. For those individuals incapable of this, the community and philanthropic

institutions provided assistance. What little the

State governments did involved custodial care of

“the poor, “ “the orphaned, ” and “the disabled”

in asylums. Toward the close of the 19th century,

the industrial revolution altered the economy and

changed this society forever.

Economic development, labor specialization,

and urbanization shifted this country from a

predominantly land-based, rural, individualistic

society to a highly industrialized and interdependent one whose people depended on a continuing

flow of wage income to provide economic security. The extended family and the tightly knit community it fostered largely passed out of existence.

Informal structures such as families, community,

and philanthropic institutions became incapable

of dealing effectively with the problem of economic need and dependency.

139
140 . Technology and Handicapped People

The responsibility for those with special dependency problems gradually passed, in substantial part, to government. In the 20th century, government efforts, largely at the State level, were

directed at providing cash relief to various categories of “the poor, “ “the orphaned, ” and “the disabled” in their own homes. By the 1920’s, a growing number of States created programs to assist

elderly and disabled individuals.

This period also marked the emergence of pension plans for several categories of workers to provide economic security in old age and retirement

systems for certain groups of Government employees. The Federal Government also accepted

responsibility for providing benefits and services

for World War I veterans. States also enacted the

first workers compensation programs.

The inadequacy of these early government efforts to deal with the problem of economic security became dramatically evident during the great

depression of the 1930’s. All of the previous State

government mechanisms for mitigating the economic hardships of unemployment, old age, and

the breadwinner’s death or disability proved totally inadequate in the face of a national economic

disaster. In the New Deal era, Federal programs

were enacted to meet the economic needs of the

population. In the 1960’s, Congress authorized a

vast array of new Federal programs and expanded

the old ones to provide for the needs of elderly,

poor, unemployed, and disabled people and

children.

The development of Federal programs and

expenditures for disabled people was thus an outgrowth of a larger movement in government—

particularly at the Federal level—that required increasing responsibility for insuring economic security to the Nation. Indeed, within this movement,

income maintenance provisions for disabled people came relatively late. While concern for rehabilitation had been expressed in the 1920’s, leading

to Federal funding of vocational rehabilitation

services in education grants, it was not until the

1950’s that major attention was focused on income

support for disabled people as a separate group.

The sole exception was blind persons.

The two largest income support programs for

disabled people became law in the 1950s: Aid to

the Permanently and Totally Disabled (APTD)

in 1950; and Social Security Disability Insurance

(SSDI) in 1956, which has already been discussed.

APTD arose largely because efforts to expand and

systemize the welfare programs of the New Deal

encountered political opposition in Congress. In

the face of this political inertia, proponents of aid

(to “the needy handicapped”) as part of a comprehensive assistance program were forced to

enact a new program specifically designed for this

group. Resource allocation on the basis of need

(means tested) was to be categorical. States were

not required to participate in the program. The

Federal matching grant formula was complicated,

and definitions of eligibility varied from State to

State.

The Great Society programs of the mid-1960’s

vastly expanded the resources allocated to disabled people—e. g., Congress created the Medicare and Medicaid programs. Originally intended

as a health insurance program for short-term illnesses among elderly people, Medicare became

a major source of funds for disabled individuals.

The non-Social Security needy population—

disabled people in need of assistance and others—

was served by Medicaid, which quickly became

a mainstay of medical assistance to disabled people outside the Social Security system.

The final block in the Federal income maintenance and medical care structure for disabled people was the Supplemental Security Income (SSI)

program, as described in chapter 9.

Throughout this period, all social services

available to “needy” persons, including those with

disabilities, expanded. Vocational rehabilitation

agencies extended services to all disabled individuals and began rehabilitation programs specifically for SSDI and SSI beneficiaries. In 1975, title

XX of the Social Security Act provided block

grants to States for social services.

Although they represent the largest expenditures for disabled people, the four major Federal

programs in place by the mid-1970’s were outgrowths of resource allocation decisions directed

principally toward elderly people. Disabled people were included when it was recognized that

their needs were unmet by existing program struc-
Ch. 11 l—Resource Allocation: Issues and Conclusions ● 141

tures. With the exception of rehabilitation services, the social service programs also regarded disabled people as merely one of many needy groups.

There is, however, another historical movement

that arose during this period—that of disabled

people themselves asserting their rights.

During the 1960’s, attitudes toward disabled

people began to change. First, media attention incited public outrage at unnecessary and careless

incarceration of disabled individuals in institutions. Court cases and litigation documented

widespread abuse of institutionalized persons. As

an outgrowth of this protest, disabled persons and

their advocates began to question the resource

allocation decisions that affected their lives. They

demanded greater personal autonomy in these decisions. This questioning spawned the independent living movement, the consumer involvement

movement, and the drive to gain legal rights for

disabled people. At the heart of the independent

living movement is the idea of exercising control

over one’s life.

The deinstitutionalization movement also

stemmed from this widespread criticism of institutions. Those disabled by mental impairments were

released from large sterile institutions so they

could be served in smaller community-based facilities. This change was in large part one of

resource allocation. Moneys spent on institutions

were shifted to community facilities in response

to the demands of disabled people. With the

passage of Medicaid, States began a massive shift

from using only their own State moneys to relying largely on Federal funds for skilled nursing

and intermediate-care facilities. Through the independent living movement and reinstitutionalization, it became apparent that disabled individuals were capable of assuming far greater responsibilities for their lives and the public resources

devoted to them than previously imagined.

Disabled people also began to assert their civil

rights to protest denials of access to public

facilities and to shed the stigma and stereotypes

so long attached to them. In the 1970’s, disabled

people began demanding—not unlike the civil

rights movement of the 1960’s—a reallocation of

public resources to facilitate their integration into

the mainstream of society.

The disability rights movement produced a new

type of resource allocation decision unrelated to

the traditional areas of income maintenance, rehabilitation, and custodial care: affirmative action and nondiscrimination laws. Rather than allocating Federal resources, Congress created statutes that mandated the allocation of State, local,

and private resources to facilitate the “mainstreaming” of disabled individuals.

The Federal resources involved in implementing such statutes are small compared to those for

income maintenance and social service programs.

The social cost of this type of allocation decision,

however, can be very high. It is, perhaps, the most

direct method of allocating resources in accord

with the desires of disabled people. It can also be

the most burdensome to the rest of society. When

linked with fiscal pressures to stem the rising costs

of traditional programs for disabled persons, this

type of allocation method can contribute to the

resource allocation dilemma that today’s policymakers confront: how to achieve effective allocation to match increasing needs and demands while

faced with declining resource availability.

RESOURCE ALLOCATION DECISIONS

There are two extremely important background ment follows from the general observation that

points to be made in regard to the issue of tech- all decisions under circumstances of scarce

nology and resource allocation. First, all decisions resources are ones of resource allocation, An exconcerning the development and use of technol- ample of a direct resource allocation decision

ogies for disabled persons are either directly or would be legislation requiring that all new phone

indirectly resource allocation decisions. This state- handsets be compatible with the induction setting
142 . Technology and Handicapped People

.—. .

of hearing aids. * There would also be indirect

resource implications of any such legislation. An

example of a decision where the indirect impact

on resource allocation would be the critical factor might be legislation appropriating substantial funds for a program to develop methods for

restructuring jobs and job sites for disabled persons. The direct appropriation for such a program

would possibly be small in comparison to the resource implications brought about by the increased numbers of disabled people who could be

employed and thus earning a wage, paying taxes,

leaving public income maintenance programs, and

so on.

The second background point is that nearly all

resource allocation decisions involve a compromise. There is rarely an obvious choice to be made

that every relevant party agrees with and supports. Social, economic, technical, and political

considerations must be considered as a mixture

of applicable variables. This situation implies that

analysis, especially quantitative analysis, can rarely if ever play the determining role in a policy decision, Interestingly, this situation also implies

that analysis can play an important role: Because

there are so many different types of variables to

be considered in a resource allocation decision,

and because the indirect and often unintended impacts of such a decision can be so important,

methods of structuring decisions and forcing explicit consideration of the range of relevant factors are desirable. Analytical techniques will be

discussed in a later section of this chapter.

Resource allocation decisions can be as complicated as they are pervasive. There are several

ways to characterize them. One is by the level of

the decision. It can be a societal-level decision,

a program decision, an institutional one, or an

individual decision. Another way to distinguish

between types of allocation decisions is by

whether they are directly allocation decisions or

whether they are primarily direct spending deci-

● Most hearing aids have a “telephone” or “induction” setting that

allows the aid to pick up the electromagnetic signal produced by

most telephone handsets. However, it is estimated that at least 35

million of the 170 million telephones in the United States do not

produce an electromagnetic signal that produces compatibility with

hearing aids. Hearing-impaired people are thus denied the use of

those telephones, Ironically, many of the incompatible sets are located in hospitals,

sions that affect allocation only indirectly. A third

way of characterizing these decisions is by the

principal substantive areas they address. For example, a decision may be primarily, or directly,

oriented to allocating transportation resources.

Levels of Decisionmaking

The importance of distinguishing between various levels of decisionmaking lies in the differing

scope of costs and outcomes to be considered, the

differing analytical tools available, and the differing parties at interest whose views and desires

could be taken into account.

The types of decision variables do not change

very much between levels, but their relative importance does. Table 9 shows the type of decision variables that might be considered in any

allocation decision. Legal considerations, for example, still play a role but are less important at

the individual level. The reverse is true for psychological aspects of a decision. The costs and

benefits of any decision follow from the variables

listed. Thus, the relative importance of various

types of costs or benefits changes depending on

the level of decisionmaking.

Allocation Versus Spending

Strictly speaking, a resource allocation decision

should be one where a set amount of resources

is distributed among programs, people, goals, or

some other division of possible recipients. This

Table 9.—CompariSon of Decision Levels and

Decision Variables

Level of decision

Decision

variables

Technical. . . . . .

Personal gains

and biases of

decisionmaker .

Social . .

Psychological ...

Legal ., ., . . .

Economic ... .,

Political ., . . . . .

Ethical . . . . . .

Societal

A

-

C/B

c

A

A

A

A

Program Institutional Individual

A

B

A

c

A

A

A

B

A

B/A

B

B/A

B

A

A

B

A

A

B

A

c

c

B

A Crltlcal variable

B Moderate variable

C Marginal variable

SOURCE Off Ice of Technology Assessment
Ch. 11—Resource Allocation: Issues and Conclusions ● 143

type of resource allocation is direct. It may have

a substantial amount of visibility—as when the

Congress allocates the budget between human

services and other areas—or may be a more private one—as when a disabled individual decides

how to divide a fixed amount of income among

competing uses, or a medical devices company

allocates its resources between research and development (R&D), sales, production, etc.

A more complicated allocation decision is one

in which no direct distribution among competing

uses appears to take place. Seemingly, only a

spending decision is made. A person decides to

buy a power wheelchair, for example. Or the Veterans Administration (VA) decides to include a

technology in its package of services. Such decisions may appear to be relatively straightforward

questions of expenditures. However, they may involve other, sometimes more important, questions. They may turn out to be allocation decisions in two ways. First, any decision to spend

money from a limited budget reduces the amount

of funds remaining. Money has been in effect

denied to all other possible competing uses. Second, a decision may lead to further nondiscretionary expenditures, further reducing remaining

funds. A power wheelchair, for example, may require more maintenance expenses, battery costs,

etc. In effect, money has been allocated without

the opportunity to explicitly compare the alternative uses for those funds.

Substantive Area of Decisions

This way of characterizing decisions is important because of the nature of decisions and decisionmakers. Many decisionmakers tend to think

in categorical, programmatic, or subject-area

terms. Medicare officials, for example, make decisions in relation to the effects on the Medicare program and, perhaps secondarily, on the Medicare

constituents. This orientation is natural, but, more

importantly, it is reinforced by the organization

of programs and responsibilities. The number and

size of programs and services for disabled people

create the conditions for thinking and administering in a relatively narrow manner, and yet at the

same time they demand, ideally, a more comprehensive decision orientation. This is especially true

at the Federal level.

CURRENT ISSUES IN RESOURCE ALLOCATION

This section includes discussions of several issues related to resource allocation. The issues covered are not the only ones that exist. There are

others that are also quite important. “Competition” between programs for mental health, mental disability, and physical disability as an issue

of competing values in society is one example.

Another is the issue of how best to allocate funds

for maternal and child health programs in order

to prevent or ameliorate disabilities. Thus, the issues below are meant to illustrate the types of

issues that are faced by those people involved in

disability policy and programs.

Eligibility Determinations and the

Definition of Disability and Handicap

At present, most resource allocation decisions

focus attention on the individual and the disability

instead of the context—the social and physical environments of the individual. For example, in recent debates about the increasing costs of disability, a great deal of attention has been focused on

the question of why more and more people are

claiming disability, but little attention has been

given to the economic situation that may force

people with various disabilities out of the work

force because their abilities are no longer needed.

Solutions to date have largely included intensifying the evidentiary rules for establishing disability, rather than examining what can be done to

modify the situation to provide greater opportunities for disabled individuals. The easier course

has been to make a particular program’s definition of eligibility more restrictive, rather than to

reallocate resources in a manner that will allow

the abilities of an individual to find productive

expression.

The present tendency to define individuals in

terms of medical categories fails to take into ac-
144 ● Technology and Handicapped People —

count wide variations in individual performance

due to differences in motivation, native strengths

and weaknesses, available technologies, and environment. Many people in the field have long

felt that a more useful definition of disability

would be based on individuals’ functional performance—i.e., upon their abilities. A functional

definition of (disability provides a broader view

of the individual in his or her environment. It is

also crucial to keep in mind the dynamic nature

of both abilities and disabilities. They change over

time, Services and policies must not be based on

a concept of disabilities as static. Resource allocation decisions based on this definition could systematically take into account personal adaptations

to the underlying condition; available environmental and technological supports; changes over

time in age, attitude, and motivation; and a variety of possible roles that might be filled in a given

profession. The focus is then on the circumstances

and not the underlying condition.

A disability is currently defined by various

medically significant, mental and/or physical conditions. Categorization based solely on these

medical labels reflects a focus almost exclusively

on the inability rather than ability. Often this

thinking results in resource allocation decisions

that preclude opportunities. Compensatory abilities are neglected, and the (in part thereby) handicapped person may become segregated, frustrated, and economically dependent. Such definitions tend to create the handicap out of the disability. They may skew resource allocations in

ineffective directions.

One of the most promising comprehensive

definitions is offered by Saad Nagi, * although he

uses the term “disability” instead of “handicap,”

which OTA has chosen.

. . . . disability is a form of inability or limitation in performing roles and tasks expected of an

individual within a social environment. These

tasks and roles are organized in spheres of life activities involved in self-care, education . . , interpersonal relations, recreation, economic life,

and employment or vocational concerns . , . .

● S. Z. Nagi, “Criteria for Evaluating Disability, Eligibility for Benefits and Needs for Services” (unpublished paper), Ohio State University, 1976.

Thus, disabled persons are those who are limited in their ability to perform certain daily activities. Every disabled individual is, by definition, limited to some extent and therefore will fall

along a continuum according to the extent of that

limitation. Although one person may have a more

severe limitation than another, each requires assistance to overcome or compensate for his or her

particular limitations. The focus can then be

shifted from the disability per se to what resources

an individual requires to overcome the disability

and enhance his or her abilities,

If a handicap is viewed as the combination of

a disability and other environmental factors, and

given that a specific disability does not preclude

the existence of other abilities, then the means of

alleviating the problems posed by the handicap

become quite different. With a presumption of

both disability and ability, the resource allocation decision becomes a task of altering the environment in order to maximize the individual’s

abilities to perform at levels comparable to the

nonhandicapped. In that event, “nonhandicapped” would include both disabled and nondisabled persons.

The policymaker might use this framework for

understanding the context of disability to make

more effective resource allocation decisions to accommodate disabled persons. Resources can be

allocated to enhance employment and independent living opportunities as well as other programs

that seek to maximize the abilities of individuals.

The policymaker can also use this framework to

allocate resources to modify the physical environment of the disabled person, since it is often the

environment that inhibits typical function. One

of the most effective ways of doing this is to develop technologies that can assist disabled persons

in performing ordinary daily activities.

The voice-controlled wheelchair, for example,

uses a voice-command computer to enable a paralyzed person to move about. It also operates an

environmental control system installed in an office or home that will open the door, turn on the

lights, change television or radio stations, dial a

telephone number, operate a page turner, or run

a tape recorder on command. The voice-controlled wheelchair can accommodate any language
Ch. 11—Resource Allocation: Issues and Conclusions ● 145 ——. —.

—even patterns of sounds by persons who cannot vocalize in a language. The allocation of

resources for similar independence and ability enhancing technologies should be a prime goal of

public policies toward disability.

Development of new technologies is only one

example of the directions in resource allocation

that policy makers could take if they used comprehensive approaches to the concept of disability, An important effect of such approaches would

be to convey to policy makers an understanding

that resource allocation decisions must be based

on abilities as well as disabilities.

Categorical Orientation of Allocation

A large number of separate constituencies have

been supportive of their various program areas

and have come into existence as a result of the

present organizational structure of programs for

disabled people. Despite these factors, there has

been considerable movement already towards

commonality. One major issue to be considered

is the degree to which generic programs, as opposed to ones organized by categories of disability, should be encouraged.

A major step toward integration has occurred

in the change in the traditional thrust of rehabilitation services for adults from that of merely employment toward a broader range of goals by including severely disabled individuals in that program area. The developmental disabilities program area, in relating to the most severely disabled individuals, extends its principal services beyond the more traditional school age and educational aspects to those required over the entire life

of the individual, including work roles. One other

possible need, however, is a greater orientation

toward vocational goals at an earlier age. There

is at present a discontinuity between educational

programs for disabled children and vocational

programs.

Reorganization of a generic program for disabled persons could reflect the model already in

existence for developmental disabilities, which

crosses age boundaries and boundaries of education and work sites. An alternative generic program may continue to recognize age boundaries

in terms of delivery of services within the educational system versus outside the system, but some

greater integration would be desirable.

The crucial policy issue in any alternative generic program is that of the degree of severity of

the problem to be addressed (e.g., the lessening

of the effects of disability) and the allocation of

Federal funds. An ad hoc decision has already

been made in the budgetary process wherein funds

are differentially provided to these various program areas. Federal support for educational programs for disabled children, in the range of $1

billion, is roughly comparable to the support provided for rehabilitation; the support for developmental disabilities is in the range of $50 million.

Support for education has been mainly provided

at the local and State level, with the Federal contribution relatively small and considered supplemental. Federal support for vocational rehabilitation has been a traditionally larger contribution.

A major issue currently is the allocation of funds

for those individuals who are most severely disabled (for whom funds have not traditionally been

made available by the States and localities). A generic program for disabled persons may be organized around the issue of degree of support required rather than existing categories and would

make even more critical the need for decisions at

the congressional level as to priorities.

Within each of the existing program areas, a

similar issue arises when categorical aspects are

considered. Considerable movement has already

occurred within each of the program areas toward

more functional descriptions of those to be considered eligible for services. Although the principle of “impairment” based on medical conditions

or diagnostic categories remains, there has been

some lessening of its use, particularly in the area

of developmental disabilities.

One issue to be resolved, or at least considered,

is an organization of services to disabled children

that would be based on the degree of severity of

the disability rather than on any medical or other

category. A cost sharing principle has been in existence for some time in the relationship between

the Federal interest and the interest of the States

and localities for the increased costs for disabled

children. A Federal policy issue is what the dis-
146 ž Technology and Handicapped People

tribution of Federal resources should be at different levels of intensity of services. Debate may

then focus on the formula for allocation of Federal

funds. Some elements in such a review would include methods for the encouragement of integration of disabled children into the mainstream of

education and a continued Federal interest in protecting the most severely disabled individuals, as

well as the differential costs of various service

levels.

A movement toward generic (noncategorical)

programs based on the intensity of services required could reduce the amount of inappropriate

categorization of individuals in terms of impairments (or diagnostic categories). The focus of such

a determination could shift attention from the

services provided directly to a specific child to

broader programmatic support that would help

all children requiring such services within the educational system.

No matter what area of Federal policy is

involved—education, vocational rehabilitation,

health care, social services, housing, etc.—

allocation by program and by geographic or population basis is hampered by the state of data

available on the types, amounts, and results of

current services and other technologies being delivered and planned for. Current management information systems, as discussed in chapter 3, are

not oriented to providing individuals, State governments, or the Federal Government with adequate, functionally based information.

Issues of Resource Allocation

and Independent Living

One of the primary directions of the independent living movement is the participation of disabled persons in making decisions about themselves. The implementation of this potentially far-

-reaching concept has been relatively slow. None

of the management information systems in existence or projected in the near future will collect

data as to the actual level of participation of the

clients, Doing so might help to make the goal of

independence more feasible in itself. The issue to

be considered is the degree to which it is a Federal

resource allocation priority to encourage consumer participation and independent living.

Another goal of the independent living movement concerns the locus of the problem. If, as traditionally thought, the problem is sited in the client, resources are allocated for training and other

programs to make the client better able to interact

with a given environment. However, if the problem is also in the environment, as mentioned previously, then resources might be differently allocated. A portion of the funds might be allocated

for changes in the physical environment for individual persons or for groups. Funds might be allocated preferentially for the development and

maintenance of devices that would permit more

effective interaction with the environment.

The third issue that arises as a result of the independent living movement is the degree to which

the process of rehabilitation can be carried out

in independent living centers under the control of

disabled persons rather than through more traditional, professionally controlled programs. There

may be a potential for less costly and more effective services via this innovation. The significance

of this alternative mode of service delivery has

been noted in the existing Rehabilitation Act but

funded to only a very limited degree. Once again,

a decision to encourage such activities would be

translated into the percentage of the total budget

devoted either directly by the Federal level or by

an earmarked component of those funds delegated

to the States. The Federal interest in early support for demonstration of effectiveness of innovative alternatives may be seen as a priority which

States and localities are generally less likely to

support.

Outcome Measures Used in

Resource Allocation

The measures of outcome or effectiveness of

Federal programs for disabled people are numerous and have changed over the years. “Productivity, ” however, is still one of the primary outcomes sought. The measure of productivity has

been expanded recently beyond earnings in employment to recognize the contributions to productivity made by homemakers and to the community by unpaid volunteers. This measure, however expanded, remains one of the basic measures

of outcome.
Ch. 11—Resource Allocation: Issues and Conclusions . 147

Another outcome sought by more recent allocation decisions is the degree to which the individual

is able to function in the “least restrictive” environment. Like the principle of productivity, this outcome relates to independence and to the degree

of support by others. It is important to recognize

that less restrictive environments are frequently,

but not always, ones in which costs are lessened.

The so-called “deinstitutionalization” movement

has sought, with some public support of community-based services, to increase the likelihood of

disabled persons living independently in their own

homes or in group homes. Both the expansion of

the principle of productivity outcomes to other

than gainful employment and the expansion of the

range of options for support for living independently are relatively new concepts expressed in the

most recent law.

Underlying these new concepts has been another outcome widely sought by disabled persons

themselves: self-determination. This goal is expressed in public policy in the requirement for client participation in the creation of individualized

rehabilitation or educational plans. Self-determination implies independence and individual initiative. It is having more control over one’s own

life than has typically been the case for many disabled people due to the amount of control exercised by physicians and other professionals.

The outcomes may be mutually supportive and

should be considered together when allocating

resources. Self-determination in terms of clients’

participation in planning for themselves is in itself

a major outcome and is likely to enhance the other

outcomes of productivity and community living.

Involvement in the planning process would include not only participation in setting goals, but

also contributing to the identification and development of the means by which problems are to

solved and goals reached.

The management and administrative skills necessary for “producing” such a blend of outcomes

may be somewhat different from those in the “production” of a job placement. One idea to be considered is the use of a management system appropriate for the development of new technology and

ideas—the management of an R&D firm rather

than an auto factory. The principle is that of

resource development rather than simply allocation. Such an approach is highly compatible with,

for example, the professional goals of a rehabilitation counselor. However, its actual implementation could require meticulous attention to the

attaining of goals through the participation of disabled persons to a much greater degree than at

present. This idea is one of the tenets of the independent living movement. The recent funding of

programs under title VII of the existing Vocational

Rehabilitation Act provides an opportunity for

assessing the cost effectiveness of services being

provided in this more participatory manner.

Prevention of Impairments

and Disabilities

Although prevention is the theoretical ideal,

and despite many significant success stories (e. g.,

polio vaccine), the goal of prevention remains

unfulfilled due to a combination of inadequate

knowledge, human nature, and finite resources.

Even if resources were unconstrained, it would

be difficult to prevent diseases and other disabling

conditions whose causes are unknown or for

which no effective preventive technologies can be

devised with current knowledge. This knowledge

constraint underscores one of the aspects of “resource capability:” Resource capability refers not

just to the amount of resources available but also

to the degree of ability to use them. Thus, the

country cannot spend money administering a vaccine that does not exist, just as it cannot effectively spend money persuading people of the risks

associated with various behaviors if the knowledge of effective information transfer techniques

does not exist. A critical issue of resource allocation related to prevention is what share of its resources a society allocates not just to prevention

but also to the search for the ability to prevent

disabilities. Basic research on motor function,

tissue structure and regeneration, molecular genetics, enzyme function, and cell biology in general

are examples of promising areas of basic research.

Just as important, however, is research on the development and engineering of technologies that

have been made possible through basic research.

Similarly, research is needed in services delivery

(e.g., how can vaccines be most effectively de-
148 ● Technology and Handicapped Peep/e

— .

livered), in policy and programs (e.g., how can

prevention programs be most effectively and efficiently administered), and in demographics and

epidemiology (e.g., who is at risk; how can such

individuals be identified in advance?).

In discussions of prevention, human nature is

sometimes termed “imperfect” or “self-defeating”

because humans do not always seem to act in their

own, safe, rational best interest. Although the

philosophical dimensions of the attitudes behind

the use of such terms are not the subject here, it

should be noted that seemingly irrational, risktaking behavior is not necessarily “imperfect” or

Improper.” It maybe a reflection of different individuals placing different values on risk-taking,

risk-aversion, probability of negative outcomes,

and the meaning of possible outcomes. Whatever

the human motives involved, policies toward prevention must take human nature into account.

The success of a public health campaign of immunization against childhood diseases, for example, is very much dependent on the willingness

of parents and children to comply, to take the vaccine. This may require informing the relevant

population of risks and benefits of vaccination;

it may require the establishment of various sanctions for failure to comply. Public policy must address a range of attitudes before resources can be

successfully devoted to prevention. “Seat belts are

inconvenient and uncomfortable. ” “I like to

smoke. ” Statements such as this may seem mundane and obvious, but the attitudes behind them

often reflect strongly held feelings of personal

freedom and determination. They must be considered in the allocation of resources for prevention.

This leads to another issue of resource allocation and prevention: Who in society decides what

negative consequences are to be prevented? On

what conceptual and pragmatic bases are resources then committed to preventing the identified outcomes? The answers to those questions

illustrate a critical property of prevention of disabilities. Preventive technologies are applied by

all individuals and all institutions in society. Individuals apply them when, for example, they

seek prenatal care, wear seat belts, stop (or never

start) smoking, reduce their use of drugs, and follow safety instructions on the job. Institutions

apply them at all levels. The Federal Government

devotes resources to auto safety, maternal and

child health, immunization campaigns, food and

drug safety regulation, basic research on the

causes and mechanics of disease, airport safety,

and (on a less direct level) a foreign policy that

reduces military casualties. States and local governments apply resources to similar activities, including health and safety regulation in the workplace and in public institutions such as schools.

Industry and other commercial organizations can

apply prevention technologies in workplace safety

and in programs for alcoholism and drug abuse.

Schools teach driver education. The list could, of

course, go on. The point is that prevention is not

just a Federal or even a governmental responsibility alone.

Governments, however, and especially the Federal Government, are the institutions of society

where responsibility has been placed for much of

the generation of knowledge about, and development of more technical approaches to, prevention.

Especially when prevention is seen as a common

good or a public good, the Federal role has been

prominent. This is the case, for example, with respect to the encouragement of vaccine development, the regulation of foods, drugs, and medical

devices, the development of (or encouragement

or mandating of) technologies for safer highways

and automobiles, basic research in most areas,

and public information campaigns on hazards or

risk-associated behavior.

The above decision has referred to the “who”

part of the question about the allocation of resources for prevention. “On what bases” resources

are allocated is a much more difficult question to

address, At the Federal level, Congress creates and

funds prevention technologies and programs. The

executive agencies administer the programs and

decide the finer distribution of the available

resources. In both cases, a mixture of humanitarianism, economics, politics, and scientific capability affect the decisions made. As pointed out in

the case study on passive restraint systems (see

the background paper on this topic), prevention

must compete with cure, reduction of suffering,

and rehabilitation for each condition or disability. The aspects of a decision listed above apply

to both prevention and treatment. Becaus e
Ch. 11—Resource Allocation: Issues and Conclusions ● 149

— — . .

resources are finite, and often quite limited,

resources must be distributed between current

treatment and rehabilitation of disabilities and the

future prevention of them.

Thus, even if analysis of costs and benefits of

prevention versus treatment and rehabilitation indicates that prevention is economically and humanistically preferable, the existence of people,

today, with disabilities means that resources cannot all be allocated to prevention. There is no correct split between prevention and rehabilitation.

OTA finds, however, that decisionmakers should

more often expand their analysis to include the

benefits and costs of devoting somewhat increased

portions of resources to prevention, to development of preventive technologies, and to development of effective techniques for delivery of preventive technologies and information on risks.

Further, and very critically, the definitions of

disability and handicap gaining prominence in the

disability area, and adopted by this report, allow

a modified concept of prevention that holds great

potential. That is, decisionmakers at the Federal

level (indeed, all levels), in addition to allocating

resources between prevention of impairments and

disabilities and rehabilitation of currently disabled

people, could adopt a new, explicit strategy of

preventing disabilities from becoming handicaps.

The actions embodied in this strategy are not all

new, but the idea of seeking opportunities to apply resources consistently and comprehensively

to the prevention of handicaps is new and could

serve as a potentially structuring concept for

resource allocation. A disability becomes a handicap when the physical and social environment

combines with a disability to prevent the accomplishment of a typical functional task. A physically disabled person who uses a wheelchair will not

be handicapped if a prevention strategy has made

transportation systems and buildings accessible.

A deaf person will not be handicapped in a job

or in social functions if telecommunications

devices are available and permit the carrying out

of the needed functions of communication. Such

prevention is not free. In some cases, it may require the allocation of extensive resources. In

others, it could be relatively inexpensive—e. g.,

modifying telephone receivers to make them compatible with hearing aids, or requiring braille

markings on elevator buttons. Each possible intervention should be submitted to analysis. The key,

however, is viewing the possible technological

intervention not simply as an expenditure but

rather as an investment in prevention.

Resource Allocation and Elderly People

An increasingly critical resource allocation issue, which will be covered only briefly, is how

society and its decisionmakers, at all levels, will

react to and deal with the changing age distribution of the U. S. population.

Growing old in America has become in some

ways less of a threat to one’s self-esteem and economic survival than previously, The majority of

elderly people are, in fact, self-supporting and relatively healthy. In proportional terms, however,

there is a higher incidence of disability among elderly people, The aging process is associated with

reduced ability for sight, hearing, and mobility

in a higher percentage of elderly people than is

found in the general population. The incidence

and prevalence of chronic diseases, such as cancers, heart and circulatory conditions, and arthritis, increase with the age of a population. These

conditions imply increased need for medical and

social services, along with increased costs for

those services—and in our society lead to increased dependency. *

The social and financial implications of an elderly segment of the population were serious in

the past when about 5 percent of the country’s

population was age 65 and older. They are critical

today: More than 12 percent of the population

is age 65 and over, and that percentage may rise

to 20 percent or more by 2030. Technological advances in the next 30 years could significantly

reduce mortality (death) and morbidity (disease

and disability) rates of elderly people, and the proportion of elderly people in the population could

rise even more dramatically than anticipated.

Federal decisionmakers make a great many

resource allocation decisions

affected by the population

Social Security and Medicare

of programs involving many

that affect and are

of elderly people.

are prime examples

billions of dollars.

*This discussion is based on ref. 6.
150 ● Technology and Handicapped People

But policies on other matters such as retirement

age, tax treatment of retirement accounts, types

of technologies and services provided or paid for

by medical and social services programs, tax policy related to voluntary work, and actions relative

to age discrimination also affect the allocation of

resources for and by elderly people.

This OTA report is on disabilities, not on aging.

The resource allocation problems associated with

an elderly population are an issue, however, because disability among elderly people will be one

of the crucial aspects of their need for funds, services, and policies that allow greater independence

and self-determination. The key potential problem of resource allocation posed by an elderly

population is the disparity between the fiscal and

social contributions by elderly people that policies

encourage (or allow) and the fiscal and social

needs that increased numbers of elderly people

will present.

Analytical Methods for

Informing Decisionmaking

Finding an appropriate or feasible match between spending goals and resource capabilities requires adequate information relating to both sides

of the “fit. ” Goals must be clear, explicit, and realistically determined. Capabilities must be understood along several dimensions. Resource capability means more than simply the availability of

funds. It also implies an adequate knowledge base,

especially of potential resultant outcomes and of

the potential tradeoffs that might be required.

Much of the needed information cannot be provided adequately by formal analytical techniques.

Politics, philosophies, concepts of distributive and

compensatory justice, * and emotions are intimate

aspects of decisions in the disability-related area.

But a substantial amount of the needed, and often

inadequate, information base can be provided or — —

‘Compensatory justice deals with distribution of resources in consideration of past harms rendered. Although it is at times a significant element in policy discussions about disability, it has been less

important and central to policy than has the concept of distributive

justice. Distributive justice deals with the distribution of resources

in proper share to each party with a legitimate claim to them. Most

often, Western culture in theory bases “proper share on the idea

of the fundamental equality of individuals, each with an equal right

to the resources required for a satisfying quality of life (183).

at least improved by careful use of formal analysis. The danger is inappropriate use: Analysis cannot replace judgment or overrule less objective but

more important considerations.

Role of Analytical Techniques

The inherent complexities and uncertainties associated with many decisions make it very difficult to identify and weigh all the possible consequences of those decisions. Often, however, the

process of analysis can give structure to the problem in question, can allow an open consideration

of all the relevant effects of a decision, and can

help force the explicit treatment of key assumptions.

The use of formal analysis in the area of disability-related policy has both its enthusiastic proponents and its skeptical detractors. As with the

use of technology, however, the most logical position seems to be that analysis can aid in performing the functions mentioned above when it is adequately conceived and designed, conducted properly, and its results are given only an appropriate

weight in the process of making the decision.

Analysis can illuminate issues and provide synthesis of relevant data. It can provide numbers.

But only rarely can those numbers serve as the

sole or primary basis for a resource allocation

decision.

Analytical techniques are only tools. They can

be ignored, abused, or misused. A challenge to

analysts, consumers, and policymakers is to use

the tools in an appropriate manner, to strive for

the ideal uses, but to recognize and be explicit

about the limitations. In an ideal world, they

could be used to inform and structure the aspects

of the decision process that are listed below:

● clarify and force explicit consideration of

goals,

. clarify the problem or opportunity to be

addressed,

● identify and describe possible decision alternatives: the technical alternatives, or other

possible interventions,

. identify the range of parties at interest,

● identify the potential outcomes-positive and

negative—of possible decision alternatives
Ch. 11—Resource Allocation: Issues and Conclusions . 151

●

●

●

and the distribution of outcomes among the

parties at interest,

provide a method of considering the potential outcomes together and in relation to the

goals,

provide evaluation of actual v. projected

outcomes,

identify possible changes in interventions based on evaluation results.

These objectives of using analytical techniques

are used in a later section as the basis for a suggested approach to a resource allocation framework.

Range of Analytical Techniques

Analytical techniques are often used to provide

various types of data used in the lifecycle of technology, as described in parts I and II. Many of

these types of analysis are useful for resource allocation in general. Statistical or qualitative

surveys of the needs, desires, and capabilities of

disabled persons are used for planning services

and to generate ideas for needed new or modified

technologies, Historically, however, such surveys

have concentrated on needs, especially as defined

by parties other than the disabled persons themselves. Further, they have been subject to the

weaknesses of methodology and concept described in chapter 2 for demographic information.

Demographic studies of populations of handicapped or disabled people are also used to provide information for technology planning and for

other resource allocation decisions. Such studies

have often concentrated on categories of impairment as opposed to measures of functional limitation.

Economic and fiscal or budgetary analyses are

other analytical tools for decisionmakers. Analyses of funds spent by various Federal and State

programs for disabled people may provide useful

background information, but usually do not yield

data helpful for changing the direction, goals, or

organization of programs. It is difficult to combine such analyses with analyses of outcomes to

produce some measure of efficiency or even effectiveness. “Cost of disability studies, “ to the extent that they go beyond the preceding type of

analysis and include measures of costs other than

direct expenditures, can be useful to the setting

of goals and decision priorities.

Projections or forecasts of economic or employment conditions help decisionmakers plan for

future resource allocation. Obviously, these types

of analyses must be used judiciously and with

allowance for the inevitable uncertainty of results.

Similar caveats are attached to another type of

forecasting —that of projections of emerging and

future technological developments.

Analyses in the form of program evaluations

and services delivery research and evaluations are

some of the most common information sources

used by decisionmakers. These analyses range

from sophisticated, large-scale, computer-based

studies of program effectiveness to quickly conducted, qualitative studies of, for example, a suggested change in research priorities. There exists

no definitive evidence that the usefulness of these

techniques is heavily dependent upon their degree

of sophistication. A large body of circumstantial

evidence that is accumulating, however, indicates

analysis should at least follow certain principles

of analysis. These principles will be listed at the

end of this section.

Most commonly viewed as a technology- or

product-specific private sector activity, market

analysis could actually be helpful in many types

of resource allocation decisions by the public sector. Further, improved collection, analysis, and

dissemination of some of the above types of analytical data (e.g., demographics, technological

forecasts, economic forecasts, disability services

R&D) could be of great value to the market analysis efforts of both the public and the private sectors. If a more effective public/private collaboration is desired in regard to disability-related issues,

market analysis must no longer be viewed as a

tool for use only by profit seekers.

Cost-benefit analysis (CBA) and cost-effectiveness analysis (CEA) are relatively common forms

of analysis in the disability area. A recent OTA

study of the potential usefulness of CEA and CBA

included a review and analysis of the health policy

——— and medical literature related to CEA/CBA. * In —

‘This discussion is based on Backg?_ound Paper #l, Methodological

Issues and Literature l-?e~~ieu) of OTA’s report The Zmpl~catfons of

Cost-E~fecti~leness Ana/ysIs of MpciIcul Technology, U.S. Government Printing office, September 1980.
152 ● Technology and Handicapped People

— — — ————.—. . —

its analysis of the growth and composition of that

literature, OTA found that a considerable number

of articles dealt with birth defects, chronic diseases

(especially cardiovascular diseases and kidney

diseases), mental health services, geriatric care,

and rehabilitation technologies and services. Further, interest in these subjects and CEA/CBA is

growing.

The principal distinctions between CBA and

CEA lie in: 1) the method of valuation of the desirable consequences of a decision (the benefits), and

2) the implications of the different methods of that

valuation. Both are formal analytical techniques

for comparing the positive and negative consequences of alternative ways to allocate resources.

In CBA, all costs and all benefits typically are valued in monetary (or equivalent) terms. The results

of analysis are expressed in dollar cost per dollar

benefit, yielding a cost-benefit ratio or, sometimes, a measure of net benefit. Conceptually,

therefore, CBA can be used to evaluate the

“worth” of a project and would allow comparison

of projects of different types (e.g., elevators in

subways v. passive restraint systems in cars v. the

B-1 bomber). In CEA, on the other hand, desirable consequences are measured not in monetary

terms, but in some other units. Then, the ratios

of desirable consequences to negative consequences for alternative ways of spending are compared. Thus, competing but dissimilar projects

(such as dams v. hospitals) may not be able to

be compared adequately with standard CEA

methods; similar alternatives, however, can be

compared without the difficulty or impossibility

of valuing outcomes in monetary terms.

Both CEAs and CBAs have been conducted frequently in the disability area. Their existence,

however, does not imply the degree to which these

techniques have affected policy. Little evidence

exists on the extent of their use, but if experience

in health policy is typical, it is probable that they

have had only minor impact. The reasons for lack

of use are numerous and logical. CEA and CBA

suffer from a number of serious weaknesses, both

of immaturity and of an inherent methodological

nature. Some of these, related to the immature

state-of-the-art in the disability or general human

services area, may diminish as techniques improve. Similarly, as analysts and policymakers

gain more experience with them, the usefulness

of the techniques may increase. Many of the inherent weaknesses, such as inability to deal with

questions of equity and distribution, will continue

to affect the usefulness of CEA/CBA.

A substantial degree of effort is being put forth

in an attempt to advance the methodology of

CEA/CBA in the disability area, principally with

the support of the National Institute of Handicapped Research (NIHR). For example, a research

resource allocation method developed by the

Texas Institute for Rehabilitation Research specifically attempts to address the question of nonmonetary outcomes (27). That method of CBA

uses three general classes of outcomes: 1) outcomes of direct benefit to individuals in the target

populations for whom the research is directed, 2)

outcomes that are of indirect benefit if the research

project is successful, and 3) outcomes of indirect

benefit but not related to the success of the project. All three of these classes of benefits may have

monetary elements, but each may also include

nonmonetary benefits. Enhanced quality of services, improved policy bases for rehabilitation, expanded knowledge bases, and enhanced public

awareness of an issue are examples of such nonmonetary outcomes. The valuation of the nonmonetary measures is accomplished through a

system of ranking and weighting by a peer-reviewlike group of judges. A comparison is made between the “importance” of the various nonmonetary measures and the monetary ones in

order to assign artificial dollar values to the former.

Another example of current attempts to advance CBA methods in the disability area is provided by the more inclusive, more social-outcome

oriented model of Dodson and Collignon (73).

This model, which is still in development, is

designed to identify and measure outcomes other

than simply monetary ones related to vocational

rehabilitation in its (new) role vis-a-vis severely

disabled persons.

The potential usefulness of such methods is still

impossible to determine, On the basis of preliminary reviews, however, OTA finds that the models represent legitimate methodological advances

and yet still are prey to weaknesses of most CBA/
Ch. 11—Resource Allocation: Issues and Conclusions . 153

CEA applications. The assumptions and data

employed leave serious questions about the uses

to which any results might be applied. The aspect

that most deserves critical scrutiny is their traditional orientation to a quantitative bottom-line.

Principles of Formal Analysis

Whatever form of formal analysis the policymaker decides to use to aid in decisionmaking,

certain principles of analysis should be followed.

Table 10 lists the 10 principles for analysis that

OTA identified in its recent review of CEA and

CBA (166).

These principles are the basis of the discussion

in the following section. Blum has suggested that

an additional principle should be added between

Nos. 2 and 3 of table 10—Conduct a problem

Table 10.—Ten Principles of Formal Analysis

1. Define the problem

2. State the objectives

3. Identify the alternatives

4. Analyze the positive consequences

5. Analyze the negative consequences

6. Differentiate the perspective of the analysis

7. Perform discounting

8. Analyze uncertainties

9. Address ethical issues

10. Present and discuss results in a policy context — .—

SOURCE Off Ice of Technology Assessment U S Congress The /rnp//ca//ons

of Cosf-flfecf(venessAna/ys/s of Med/ca/ Technology OTA H 126

(Washington D C U S Government Pr!nt(ng Of f4ce August 19801

analysis. * Problem analysis consists of four basic

steps: preparing for analysis, formulating initial

problem, identifying problem precursors, and

identifying problem consequences.

‘H. Blum, University of California, Berkeley, persona] communication, Dec. 7, 1981.

STRUCTURING RESOURCE ALLOCATION DECISIONS

The discussion that follows is similar in concept and purpose to the one for appropriate

technology decisionmaking in chapter 5. In fact,

the framework discussion of chapter 5 should be

seen as relating to technology-specific resource

allocation. The discussion below is also similar

to chapter 5 in that its intent is not to produce

a checklist or “cookbook” for decisionmakers, but

rather to be a step toward decisionmaking that

takes into account the range of relevant variables.

The discussion suggests some of the elements that

an explicit framework for resource allocation decisions might have. Individual decisionmakers or

programs should adopt as much of the material

as is helpful. OTA’s purpose here is to provide

an orderly way to think about the decision process and its structure.

The discussion is based on two sets of guidelines: 1) the 10 principles of formal analysis, and

2) the list of aspects of the role of analysis in decisionmaking. These may help serve as the basis for

structuring decisions, because the primary reasons

for discussing and using a structuring rationale

is to clarify why a decision is to be made and the

problem to be addressed, to be sure all assumptions are explicit, and to force consideration of

all relevant consequences of alternatives. Thus,

the goals of analysis are essentially the goals of

the decision process, The discussions below will

primarily be from the perspective of Federal decisionmakers, but it is important to view them as

also applying to other parties, including individuals.

Explicitly Define the Problem

Resources cannot be effectively applied to a

problem unless the problem is explicitly stated and

adequately understood. It is not enough merely

to specify the goals of resource allocation. The

underlying reason for desiring to reach the goals

is an essential part of the policy development

process. It will exert tremendous, and often unappreciated, influence on what goals are selected and

how those goals are stated. “Development of a

portable, lightweight, reliable voice-synthesizing

communicator” is of course a goal statement, but

unless the organization deciding to devote resources to such development has thoroughly studied the situation that a communicator would be

designed to address, it cannot develop more helpful specifications. Similarly, before a portable
154 ● Technology and Handicapped People

voice synthesizer becomes the goal statement, the

decisionmakers should have considered the functions that are being sought through technological

intervention and the alternative technological approaches possible. That is, the function to be addressed must be considered before the form of the

solution is decided. “Make subways accessible”

is a goal, but the demographic data and human

and economic factors that lead to the need for accessibility are critical to the methods and extent

of accessibility to be required. In short, a clear

and open examination of the situation or problem

to be addressed is a prerequisite to the realistic

and effective setting of goals.

State Goals in Measurable

or Evaluable Terms

After the problem is specified, operational goals

must be set. These goals must be expressed in

measurable terms, not only because evaluation

of progress toward the goals can then be assessed,

but also because the form in which goals are expressed will affect the manner in which they are

approached. If the Federal Government and the

States allocate resources for job training and

placement programs and express the associated

goals in vague terms of increased employment percentages or increased quality of life and selfimage, the programs administering the funds will

have little guidance as to how to implement the

resource allocation decision. They will be free to

pursue high percentages of “placement,” paying

less attention to length of ensuing employment or

level of earnings or job satisfaction. This example is merely hypothetical, but Congress or the

States might wish to specify, on the basis of thorough analysis of possible goals, that their desire

for the resources is such that the goals require

subsequent employment of certain lengths or of

certain earnings.

Thus, in structuring resource allocation decisions, decisionmakers should consider the effects

that their statements of goals will have on the implementation of programs and on the ability to

do subsequent evaluations of outcomes, In effect,

adequate specification of goals is the method for

transmitting signals about the importance of various outcomes to be sought.

Specify the Range of Parties at Interest

A “party at interest” is someone with a stake

in the outcome of any action taken that distributes

resources. Federal decisionmakers must consider

the interests and reactions of a wide range of people and institutions—e.g., from taxpayers and

constituents of elected officials, to disabled individuals and groups representing disabled people,

to industry and other private organizations, to

their own and other bureaucratic organizations.

Each decisionmaker must decide which of the

many potential parties at interest will be affected

by the decisions made—i.e., any decision will distribute costs and benefits to many parties in, usually, an unequal manner. Which of the parties will

incur costs and receive benefits to such an extent

that the effects on those parties will need to be

considered in choosing among alternatives? Not

all potential parties at interest will be the subjects

of intensive analysis regarding potential positive

and negative effects, but one of the crucial aspects

of organizing or structuring a resource allocation

decision is identifying an initial broad list of possible parties at interest and then narrowing the list

to those that can feasibly be studied for purposes

of informing the ultimate decision. A desirable,

but frequently ignored, aspect of decisionmaking

is involving the principal parties at interest in analyzing the potential alternatives and possible

methods of implementing any subsequent allocation of resources.

Identify the Range of Possible Decisions

Resource allocation decisions are rarely of the

“Do X or do nothing” type. Instead, they most

often involve a choice among a series of alternative ways of distributing resources. What is

sometimes missing in the allocation of resources

for disability-related programs is creativity in

identifying the range of possible alternatives. In

the past, most allocation decisions were made on

behalf of disabled people with little input from

disabled people on possible ways to accomplish

the goals addressed. Thus, a source of ideas was

not exploited fully. Another factor limiting the

range of alternatives has been the categorical

nature of Federal programs. Medicare, for exam-
Ch. 11—Resource Allocation: Issues and Conclusions . 155 —

pie, is a medically oriented program. Because of

its tradition, perceived and actual mandate, the

orientation of its employees, and perhaps its desire

not to trespass on areas seen as the responsibility

of other agencies, the Medicare program—and the

Department of Health and Human Services, and

Congress—may see the program’s possible range

as being limited to primarily medical interventions. This situation may hold even though alternatives that are closer to social services may have

a greater potential to improve the “health” of disabled people. This does not imply that the Medicare program is at fault, merely that the categorical structure of organizations restricts a comprehensive consideration of the full range of possible alternatives that might address a particular

problem or goal.

The observation above implies two important

points for decisionmakers. First, decisionmakers

should consult with disabled persons and other

sources of ideas in putting together a list of possible alternatives, And second, in the initial analysis

of potential options, decision makers should not

confine themselves to only those types of options

that are strictly within their mandate. Even when

legal, programmatic, or budgetary constraints do

not allow the realistic consideration of these additional alternatives, they may be of use to other

agencies or other decisionmakers who have a relevant mandate.

Identify, Measure, and Value Potential

Consequences of Decisions

Once goals have been set and the range of alternatives, along with the potentially affected parties for each, has been identified, the estimation

of “costs and benefits” must take place. Quotation marks have been used to highlight the fact

that OTA is not simply referring to the results of

a traditional CBA. The shortcomings of a simplistic (not a simple) CBA have been discussed

above. It is critical that—for each alternative

method of allocating resources—the positive and

negative consequences for all significant parties

at interest be identified, measured, and (where

possiblej valued. This is obviously not a simple

task, but it is one for which effort expended can

pay large dividends in improved decisions.

The identification-measurement-valuation sequence is especially important. Identification must

take place first, obviously, but in addition, it is

important that decisionmakers not confine identification to only those items that are quantifiable.

Similarly, measurement should not be limited to

only those items to which dollar amounts can be

assigned or to those with absolute figures as opposed to relative rankings or estimates of magnitude or subjective descriptors. The consequences

of encouraging (and allocating resources for) increased participation of disabled people in R&D

as scientists and engineers and as consumer representatives will not all be expressed in numbers

of placements or numbers of advisory panels

served on or numbers of technologies designed or

developed with the involvement of disabled persons. Subtle or hard to “measure” improvement

in the appropriateness of technologies developed

may be a very important outcome. OTA finds

that simply their lack of amenability to objective

measurement and valuation should not preclude

the consideration of such outcomes as an important aspect of allocation decisions.

Consider the Effects of Time

(Discounting) and Uncertainty

It is very important for analysts and decisionmakers to be aware that time and uncertainty will

affect the estimates of potential outcomes of any

resource allocation alternatives. The three key

questions that should be explicitly asked and considered before a decision is made are as follows.

First, has the analysis of potential outcomes considered the effects of time on the values of future

costs and benefits? Second, are the analysis and

the decision to be made oriented to short-term

outcomes, to long-range outcomes, or to both?

And third, have the uncertainties of assumptions,

data, future states, and possible outcomes been

accounted for in deliberations about the desirability of various alternatives?

Because this is not solely a discussion of

resource allocation decisionmaking through the

use of formal, quantitative analysis, no definite

guidelines for the manner in which time should

be taken into account can be given. In formal

analysis, a process known as discounting is used
156 ● Technology and Handicapped People

when some of the measured positive and negative

consequences (benefits and costs) of the alternatives occur at different times. In fact, in most

allocation decisions, costs and benefits will occur

in a staggered fashion, with costs commonly being

incurred in advance of benefits. “Discounting” is

in a way similar to applying a reverse interest rate.

It is a technique for transforming future amounts

(of dollars, for example) to their “present value.”

Thus, all costs and benefits can be analyzed using

their values today.

The rationale behind discounting is a belief that

certain properties of resources and time must be

taken into account. One is that resources can be

invested and earn future gains (“opportunist y cost

of capital”). The other is that people prefer benefits today rather than tomorrow and expect to be

rewarded for postponing gratification (“social rate

of time preference”). Both these properties, in effect, mean that a dollar invested in a program today is a dollar foregone from an alternative use

(investment or consumption), and therefore it

must appreciate to more than a dollar in the future

for the investment to be accepted.

Even when a formal and quantitative analysis

is not conducted in support of a decision, it is possible (and desirable) for some informal consideration to be given to the effects of time on the value

of the future stream of costs and benefits.

Posing the question of short- versus long-term

outcome orientation is much simpler than providing answers as to how to maintain an appropriate balance between the present and the future.

This balance, in fact, is one of the hardest and

yet most crucial objectives of effective resource

allocation. The dilemma can be seen in debates

about the proper emphasis placed on basic research versus support of technology adoption, or

on prevention versus rehabilitation. Competing

but equally critical needs combined with limited

resources form the dilemma. Even though this

may be obvious, the issue should always be raised

and discussed because otherwise the pressures of

the present may exert undue influence over decisions.

The importance of considering both present and

long range implications can be illustrated by an

issue mentioned earlier. That issue is the preventing of disabilities from becoming handicaps

through alterations to the physical and social environments of the disabled person. It may seem

more pressing to allocate the limited resources

available to specific individuals for personal-assist

technologies (e.g., subsidies for closed captioning devices for the television sets of hearingimpaired persons), and yet investment in a more

environmentally oriented technological approach

may yield higher benefit for greater numbers of

people in the future. OTA is not suggesting this

is necessarily true, only that current resource

allocation does not address such possibilities to

an adequate extent.

Every decision to allocate resources is made

with some degree of uncertainty. Just as examples,

uncertainties exist in regard to the cause of diseases, the distribution of disabilities in populations, the efficacy and costs of diagnostic, preventive, and treatment or rehabilitative technologies, the desires of consumers, future economic

indicators, potential effect of education or vocational training, personal habits and needs, and

future technological “breakthroughs.” These and

the many other possible uncertainties will affect

the desirability of decision alternatives and the

ultimate success of the decisions made. Complete

accommodation of uncertainty is never possible.

Decisionmakers should, however, identify which

sources of uncertainty might strongly affect outcomes and make some effort to consider the

changes in predicted outcomes that might accompany incorrect assumptions.

What is suggested here is that such uncertainties be acknowledged and analyzed instead of ignored or hidden. In formal analysis, there is a

technique known as “sensitivity analysis” that can

be used to vary assumptions about the values of

uncertain variables and test changes in values for

their effects on predicted outcomes. Sensitivity

analysis can often be used to identify which uncertain variables have a substantial effect on outcomes, which variables do not affect outcomes

(and whose uncertainty therefore can be ignored),

and minimum and maximum values that a variable can take on without changing the desirability of an alternative decision possibility. Sensitivity analysis does not make decisions, but it can

increase confidence in estimates of outcomes.
Ch. 11—Resource Allocation: Issues and Conclusions ● 157

Accounting for uncertainty is just as important

when no formal analysis accompanies the resource

allocation decision. Although a statistical test of

uncertainty might not take place, the decisionmaker can informally and subjectively apply tests

of reason to the assumptions being used in the

decision. This may lead to a decision to postpone

a decision until data can be gathered on some

assumption, or to a decision to implement the

decision on a pilot or demonstration basis, or to

a decision to fund two or more programs to accomplish the same purpose, with provision for

review of outcomes and subsequent reevaluation

of the decision.

Consider Ethical and Other

“Nonobjective” Factors

Ethical factors are highlighted for two reasons.

First, issues of ethics, values, human dignity, personal worth, justice, compassion, and so on are

often central aspects of policy formulation and

debate in the disability area. The goals of, for example, independence and civil rights are not ones

for which most of the important variables can be

expressed in quantifiable terms. This does not

mean that such goals or the attendant variables

should not occupy a prominent place in decisionmaking. Resources are not allocated strictly or

solely on the basis of expected net return on dollars invested.

The second reason for highlighting ethical and

other subjective factors is that, despite their often

critical importance, they are frequently omitted

or given low weight in policy formulation, either

because they are not quantifiable or because they

are difficult to deal with. There are no magical

solutions to the problem of taking into account

subjective and emotionally laden aspects of the

allocation of resources. By definition, there is no

formula for their inclusion. But, the ethical and

other value dimensions of a resource allocation

decision can be identified openly to a greater extent than they are at present. And, very importantly, any formal analyses of the consequences

of decision alter-natives can be made more amenable to the consideration of ethical and other subjective factors by a purposeful decision not to seek

a single, bottom-line estimation of outcomes.

Other techniques, such as arraying (listing in

perhaps order of importance) the potential results,

could be used instead of, for example, a traditional

CBA that results in a cost-benefit ratio. That is,

the analyst would identify all the relevant potential consequences, measure and value them quantitatively when possible and appropriate, and list

those consequences that are not quantifiable in

descriptive terms, with some estimate of importance or magnitude if possible. The key, however,

is that the analyst would make no attempt to unrealistically quantify or artificially combine factors in order to yield a “clean” answer.

Provide for Evaluation of the

Results of Decisions

Providing for evaluation of the results of decisions is a seemingly obvious but frequently undervalued aspect of decisionmaking. As stated above,

decisionmaking takes place under conditions of

uncertainty. This fact of life must be taken into

account by the analyst and the decisionmaker. If

the problem to be addressed, the goals to be

sought, and the assumptions about consequences

have all been specified clearly and in measurable

terms, the basis for design of an evaluation component has been established.

Very often, evaluation of past resource allocation decisions has been the responsibility of people or organizations other than those who made

the decisions. This situation implies that evaluation will be an “after the fact” activity. Data that

readily or effectively support or even allow evaluation efforts will usually not have been collected

over the course of implementing the decision. The

objectives of the original decisionmakers may not

be adequately known by or taken into account

by subsequent evaluators. For these reasons, it is

important for those individuals or organizations

who are making resource allocation decisions (indeed, any decisions) to plan for the evaluation of

their decisions. The objectives being sought can

be specified in evaluable terms, data systems can

be designed into the decision itself, records can

be kept on populations and effects, and the timing and criteria for evaluation can be set. “Course

correction” possibilities can be examined and set
158 ● Technology and Handicapped People

forth during the process of making the allocation

decision.

If Congress is the decisionmaker, it can provide

for evaluation directly in legislation or it can less

formally plan for it by including a discussion of

anticipated evaluation needs and goals in hearings and bill reports. Whether formal or informal,

planning for evaluation should include at least the

following:

●

●

●

●

●

●

explicit statement of the problem being addressed, outcomes sought, and assumptions

about potential consequences and any other

uncertainties;

highlighting of especially critical uncertainties to be examined during evaluation;

specification of criteria against which evaluation should take place;

design of an information system to track

variables to be used during subsequent evaluations;

specification of who is to do such tracking

and how the tracking will be funded;

recommendations or specification of times

for evaluation, organization to do the evaluation, form of the evaluation; and

● any specification or suggestions of possible

changes in policy as a result of evaluation

information.

Even if fully considered and dealt with by those

allocating resources, the eight elements of a

resource allocation decision, from explicitly defining the problem to providing for evaluation of the

results will not result in obvious or perfect decisions. The goal of presenting them in this report

is simply to help make the process of allocating

resources more sensitive to uncertainty and to a

broader range of interests and possibilities. The

list is to serve as a reminder to decisionmakers

to explicitly ask themselves: What do I hope to

accomplish? Why? Who will be affected in what

ways? What assumptions am I making? Am I

avoiding the trap of numbers? And have I planned

for a test of my decision? These simple questions

may require more than simple answers, but they

are worth answering.
Part Four:

Policy Options
12

Policy Options

Refusal to accept the inevitable shortcomings of any society is responsible for a good deal of what is best in political life.

—Peter F. Drucker
Contents

Page

Production, Marketing, and Diffusion of Technologies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 163

Involvement of Disabled People and Other Consumers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 169

Research, Development, and Evaluation of Technologies . . . . . . . . . . . . . . . . . . . . . . . . . . . 172

Financial Barriers to the Use of Technology. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 177

Personnel Issues . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 179
12 ■

Policy Options

A large number of factors affect the success of

technological applications in the area of disabilities. Among the most influential factors are Federal policies. This chapter discusses possible

changes in those policies. Some involve legislative

changes. Others are oriented to actions of the executive branch, but would involve congressional

oversight or encouragement. None of them are

recommendations: OTA does not recommend any

particular course of action. They are options for

congressional consideration. The options are not,

for the most part, mutually exclusive. The adoption of one option within a category does not necessarily mean that the others are inapplicable. On

the contrary, better effect can often be had by a

careful combination of options.

Many of the generic problems that exist in this

area range from a lack of financial incentives for

manufacturers to produce devices for disabled

people, to a lack of evaluation and evaluation criteria, to inadequate information transfer systems.

These types of problems could be alleviated by

a concerted effort involving public agencies,

private organizations, and consumer and citizen

participation. However, many of the other problems are so deeply

cumstances that it

in reimbursement

rooted in complex financial cirmight take substantial changes

policies and in the public-private sector relationship to bring about significant

improvements.

Some of the problems are based in social and

psychological attitudes that cannot be changed

simply by appropriating more money or by reorganizing Federal agencies. Federal policies can

have some effect in changing attitudes, but any

substantial change may depend as much or more

on disabled persons themselves. Opportunities for

changing attitudes, however, can be enhanced by

Federal policies and administration that assure employment and education activities, thus changing

the amount of interaction that takes place between

disabled people and nondisabled persons.

The options below are presented by issue areas.

Despite this division, which is for the purposes

of presentation, it is important to bear in mind

the extremely important interactions that occur

both among the stages in the lifecycle of technology and between technical issues and resource or

social issues.

PRODUCTION, MARKETING, AND IDIFFUSION

OF DISABILITY-RELATED TECHNOLOGIES

ISSUE 1

How can the Federal Government increase the

probability that technologies will reach the

people who need and desire them?

In as many cases as possible, commercial viability should be one of the goals sought in technology developed using Federal funds. A critical

issue is how to alter the currently inadequate state

of marketing efforts and processes.

As discussed in chapters 8 and 9, one of the

most critical and yet currently inadequate stages

in the lifecycle of technologies for disabled people is the movement of technologies from development to use. Production and distribution are weak

links in the process of technology development

and diffusion. The production, marketing, and

diffusion of technologies are steps that are most

often appropriate private sector activities, and yet

a number of factors work against that sector’s

willingness and ability to engage in those activities. Research and development (R&D) organizations have typically placed a low priority on

production, marketing, and diffusion activities.

The National Aeronautics and Space Administra163
164 ● Technology and Handicapped People

tion’s (NASA’s) activities in technology transfer

illustrate an exception. In general, however, the

ultimate commercial production and distribution

of technologies being developed with Federal

funds have not been given sufficient attention.

There are several market-oriented factors that

work against the involvement of the private sector. The difficulty in projecting the markets for

disability-related technologies increases the risks

of a commercial venture, as do the often small

populations in question. Also, disabled individuals traditionally have had low average earnings

or funds at their disposal. * The financing and reimbursement policies of the Federal Government

and the States also contribute to the uncertainties of the marketplace for a firm considering the

production of a technology. (this problem is covered under the option area below on financial barriers to the acquisition of technology, )

OTA finds that the key problems in the production and marketing area are the following: 1) lack

of attention to production and marketing during

the R&D and evaluation stages (this is covered

under the option area below on research, development, and evaluation of technologies); 2)

absence of adequate data on potential markets and

on the needs, desires, and capabilities of people

in those markets; 3) lack of organizations that

could provide such data in the form needed by

potential production and marketing firms; 4)

greater than average risks related to entering the

disability market; 5) Federal fiscal and regulatory

policies that do little to reduce such risks; and 6)

inadequate mechanisms for funding the purchase

of devices (especially those seen as “not medically necessary”).

OPTION 1A

Congress could amend current legislation to

create a consistent and comprehensive set of

*As indicated earlier, figures on the average earnings of disabled

people may be deceptively low due to the fact that many such

estimates are derived from people in assistance programs. Disabled

people who are not enrolled in such programs are often not counted,

and, presumably, these people have higher earnings than the

estimates for the average disabled person. The perception of earnings levels of disabled people, however, are still based on such possibly deceptive average estimates and therefore may negatively affect the willingness of firms to take marketing ri;ks.

fiscal and regulatory incentives encouraging

private industry to invest in the production

and marketing of disability-related technologies.

This option would require a substantial effort

on the part of Congress to identify and review

relevant sections of many statutes and regulations.

Amending fiscal, monetary, and regulatory policy

to create a consistent package of incentives will

not be an easy task, nor, perhaps, one that can

be accomplished without much compromise.

Nevertheless, this option recognizes the current

confusing and often detrimental collection of competing incentives set up by such laws. It implicitly is based on several ideas: 1) that a great many

technologies, though certainly not all, could be

serving far more people than currently; 2) that

some, perhaps many, technologies’ development

and subsequent distribution depends less on further research than on the willingness and ability

of private industry to develop, produce, and market them; 3) that policies of the Government greatly affect private industry’s willingness and ability to produce and market these technologies; and

4) that current legislation and regulations do not

create adequate positive incentives for those firms

to do SO,

This option is more applicable to hard technologies such as devices than to soft technologies such

as counseling methods, planning or educational

techniques, or service delivery systems. Nevertheless, firms or other organizations that might

potentially develop and market soft technologies

should also benefit from any changes in fiscal or

regulatory incentives.

Fiscal incentives are created by policies that

reduce the financial uncertainties associated with

risk-taking in the disability field. Their objective

would be to allow private investors and firms to

make more reliable estimates of potential returns

on investment and to increase the probability of

a satisfactory return on investment, The principal

type of policy that creates fiscal incentives is taxation policy.

Regulatory incentives seek to accomplish the

same objectives as fiscal incentives but do so

through methods less directly connected to financial factors. Patent and licensing policies are ex-
Ch. 12—Policy Options . 165

amples of areas where regulatory incentives might

be created. Another example would be changes

in the penalties for noncompliance with Federal

regulations regarding the hiring of disabled people or the provision of appropriate technologies

to disabled people. This type of incentive would

increase the demand—and therefore the potential

market—for technologies, as well as more fully

utilize the skills of professionals and technicians

who happen to have disabilities.

A full study of the possible incentives and their

potential interactions and results might be necessary before this option could be implemented. The

following potential fiscal and regulatory mechanisms for creating incentives should be included

in such a study:

accelerated tax writeoff of equipment and

other capital investments;

allow individual tax deductions for devices

that are not covered by insurance or other

payment programs;

expanded efforts in guaranteeing markets to

potential producers of a technology (e.g.,

through the Veteran’s Administration (VA),

vocational rehabilitation programs, or education assistance programs);

modified capital gains taxes on investments

in firms designated as producers of disability-related technologies;

extended carryover of losses for designated

firms;

tax credits against profits for designated

small businesses for a specified number of

years;

other tax reduction policies for investors or

firms engaging in the production or delivery

of relevant technologies;

strengthening and clarifying of rules for compliance with Federal laws concerning nondiscrimination in hiring, employment, etc.,

and concerning the reasonable accommodations that must be made by employers,

schools, etc., to allow the participation of

disabled people (this mechanism acts to increase the productivity and well-being of disabled people and to increase their ability to

afford technologies, thereby increasing potential markets);

facilitating the awarding of grants and contracts to small, profit-seeking businesses for

the development and testing of relevant technologies;

cooperation with State and local governments in providing low-interest-rate loans,

direct subsidies, or guaranteed markets/purchases for small firms;

expanded coverage under Federal health insurance and service provision programs to

include those technologies which, though not

viewed as strictly “medically necessary, ” increase the capacity of disabled persons to

function more independently and productively;

modification of the present patent system to

allow small firms (which make up the majority of firms in this area) to secure patents

in less time and at less expense (e. g., through

Federal subsidies for patent expenses); and

clarification and greater standardization of

Federal policies in regard to the granting (to

firms that might produce needed technologies) of exclusive or nonexclusive licenses

to Federal patents.

In designing a package of fiscal and regulatory

incentives, Congress should consider a range of

factors that play an important role in the willingness and ability of organizations to produce and

market technologies. Some of these factors are:

●

●

●

●

●

●

the difficulty of obtaining venture or risk

capital for the production of a technology

whose future success is subject to the higher

than average uncertainties of the disability-related market;

uncertainty about patent rights for products

developed with Government funds;

uncertainty about whether the technology

will be covered by insurance companies or

Government programs;

the possibility of product liability costs;

the difficulties of “selling” the merits of a

product to intermediaries (e. g., insurance

companies, the VA school districts, Medicare) as well as direct users; and

the need to spend more time and fun& than

the average on market analysis, prototype

development and testing, and training of
166 . Technology and Handicapped People

.—

consumers and others in the maintenance

and use of the product.

The implementation of this option would have

both benefits and costs, all of which would share

some of the uncertainty inherent in this area. On

the benefit side, revenues to the Federal Government might be increased as a result of the larger

corporate taxes paid by firms and the increased

taxes paid by disabled people who would receive

technologies that allow them to lead more productive lives. Revenues would be reduced by the

amounts of any tax reductions embodied in the

fiscal incentive structure. Federal costs would be

diminished by the reduction in funds spent on income transfer, health insurance payments, etc.,

due to disabled people’s being able to leave Federal

and State programs. A prime social benefit of

changes in incentives, however, is one that would

be very difficult (perhaps impossible) to put into

dollar terms-i. e., the increases in well-being (psychological and economic) of the disabled people

who would benefit from the distribution of helpful technologies.

OPTION IB

Congress could legislatively charter a private

organization to provide marketing and production-related services to both the private

and the public sectors. *

The Federal Government, through Congress,

has occasionally granted an official Federal charter

to an organization when Congress has felt that

such an organization would serve the public welfare, An example is the charter granted to the National Academy of Sciences. Chartering can be

accomplished by an act of incorporation passed

by Congress and signed by the President. A federally chartered organization, though not a Federal agency, is or may be considered a public

organization for such things as compliance with

civil rights legislation.

The initial funds and the operating expenses for

such an organization would come from the nonpublic sector, with perhaps a small startup grant

*Much of the discussion under options IB and IC were suggested

by and drawn from a paper by Tom Joe, “The Application of Technology for the Disabled: A Joint Public-Private Venture” (Center

for the Study of Social Policy, University of Chicago, 1981).

from the Government. After startup, however,

the organization would be expected to operate on

its own revenues. For purposes of taxation, it

would be considered a nonprofit organization. An

organization of this type would be eligible to

receive funds from any source, including Government agencies, philanthropic foundations, voluntary agencies, industry, estates, and gifts or

donations.

The goal of the organization would be to provide technical assistance, analysis, and other services related to the production, marketing, and diffusion of disability-related technologies. In return

for fees, it could perform marketing surveys and

help put together market strategies for private

firms who are considering entering a new product

on the market. It could serve as a liaison between

firms or Government agencies and ultimate consumers. It could develop and manage demographic and product data sets.

The success of this type of organization might

depend on three items: the quality and reputation

of its staff, its ability to deliver helpful services,

and its ability to cope with what might be a large

demand for its services while it is still young and

growing. One of the goals of a Federal charter,

in fact, would be to give the organization the prestige to attract qualified staff members. The organization would be eligible to receive Federal and

other governmental grants and contracts. The National Institute of Handicapped Research (NIHR),

its rehabilitation engineering centers, the Rehabilitation Services Administration (RSA), VA,

NASA, the National Science Foundation, the National Institutes of Health (NIH), and other agencies should be encouraged to use the organization

as appropriate. An organization of this type must

be very careful to represent itself as being able

to deliver only those services that it can (which

will change as the organization grows and builds

expertise and data) and only within the time frame

that it can handle.

The proposed organization might be able to do

technology evaluations, either directly or by

managing evaluation projects that others are actually carrying out. However, this function should

be added to the list of the organization’s activities

only if it can be clearly and cleanly separated from
Ch. 12—Policy Options ● 167

the functions of assisting the marketing of products. Conflicts of interest could prove very harmful to the organization and its goals.

One potential advantage of the proposed organization is that it is designed to carry out an

important and currently inadequately performed

function; another is that it is located in the nonpublic sector. Potential disadvantages lie in the

possibility of conflict of interest and in the nature

of the tasks assigned to the organization. In order

to consistently attract private and public funds,

the organization would have to deliver valuable

but extremely difficult services.

One crucial point is that the proposed organization should have broad representation of many

different groups and constituencies. Consumers

and marketing and production experts would be

essential. Demographers, taxation and fiscal experts, the general public, analytical experts, technologists and researchers would also be very important to the organization’s success.

Canada has an organization similar to the one

of this option. Technical Aids and Systems for

the Handicapped, Inc. (TASH) was established

as a nonprofit corporation by the Canadian National Research Council and the Canadian Rehabilitation Council for the Disabled. It provides

marketing, supply, and maintenance services, especially for devices that are not widely available.

The experience of TASH should be examined

closely before any decision about establishing a

similar domestic organization is made.

OPTION 1C

Congress could establish a joint public-private corporation to provide marketing and

production-related services to both the private and the public sectors.

This option has goals similar to those of the

previous option and seeks to accomplish them

through somewhat similar means. The principal

difference between the two options is the legal

authority under which the proposed organization

would operate. The organization proposed in the

previous option would be considered a private

corporation for most purposes; that proposed in

this option would be as quasi-governmental entity. the entity could be a nonprofit corporation

existing to serve the public good by acting much

as a private sector organization. Analogous

organizations are the Overseas Private Investment

Corporation, the Tennessee Valley Authority, and

the Federal National Mortgage Association.

An example of a similar organization is the

Communications Satellite Corp. (COMSAT).

COMSAT is a private firm, owned by its shareholders, with a board of directors who are not

officials of the Government. It is not a public corporation, nor has it been granted a Federal charter

of incorporation. Three of COMSAT’S directors,

however, are nominated by the President and confirmed by the Senate. Even though COMSAT is

a wholly private organization, it is considered to

be performing a service that is in the best interests

of the public and has therefore been given special

status (e.g., it is by Federal statute designated the

organization that represents the United States in

the International Telecommunication Satellite Organization). COMSAT, therefore, illustrates

another possible method of aiding the establishment of an organization to provide needed

services.

The goal of setting up a public-private corporation such as that proposed in this option is to support the performance of services deemed to be in

the broad public interest through the use of primarily private funding and private sector managerial techniques. One possible and potentially

very important element of such a corporation’s

mandate could be the inclusion of a formal requirement that the corporation subcontract with

consumer groups or a single consumer organization for the testing and evaluation of technologies.

The consumer groups could be chosen competitively, on the basis of criteria established by, for

example, the board of directors of the corporation. The corporation need not be limited to consumer groups for its subcontracting, but such

groups should play a significant role in its operations. As in the previous option, the corporation should only be allowed to perform evaluation

services where no conflicts of interest exist.

Because of the possibility of conflicts of interest,

Congress may wish to establish two separate public-private corporations (or two separate chartered

organizations) to perform the two functions of
168 ● Technology and Handicapped People

providing marketing and production-related services, and evaluating technologies and disseminating the results. If so, it would be desirable to have

some mechanism to coordinate the activities of

the two organizations (e.g., a joint board of directors). It might also be desirable for the two to

share a data system, both to ensure compatibility and standardization of information and to

avoid much potential duplication.

OPTION ID

Congress could mandate the collection of

market-related demographic data by an interagency group led by the Bureau of the

Census.

This option would be an attempt to reduce

some of the uncertainty that accompanies decisions to develop or market products to be used

by disabled people. It would also be useful to the

public sector, because the data generated might

be very helpful in the setting of research priorities

and the allocation of funds for the applied

engineering and diffusion stages of technology’s

lifecycle.

Current activities of Federal agencies are primarily oriented to the collection of data by

etiological categories of impairments (and

sometimes by disabilities). Less frequently do

agencies collect data concerning limitations on

functional abilities. The information that might

be gathered from individualized plans (see ch. 3)

is not seen as a source of raw material for the

development of marketing-related data bases.

Especially absent in data collection efforts are data

on handicaps—i. e,, disabilities turned into handicaps by an interaction of the disability and the

physical and social environments. If data were

available on the demographics (e.g., age, income,

sex, other characteristics) of populations divided

by types of functional limitations, the task of projecting the needed characteristics of technologies

and the potential market for them would be made

somewhat, perhaps considerably, easier. Such an

outcome might be beneficial not only to the economic health of the private sector, but also to the

public sector and the Nation as a whole.

Chapters 2, 3, and 11 discuss the issue of data

based on functional limitations in more detail.

One important point in regard to the collection

of such data by the Bureau of the Census is that

the design and testing of the surveys should be

done with the substantial advice of disabled people, Government program administrators (especially of R&D activities), other data collection

agencies and experts (e.g., the National Center for

Health Statistics (NCHS)), and industry representatives. Alternatively, an agency with more experience in the disability field, such as NIHR,

might coordinate the data collection and analysis

efforts with the assistance of the Bureau of the

Census and NCHS. The key point here is that one

agency should have the responsibility for national

data on disabilities in order to achieve uniformity of definitions and measurements, but that agency must draw on the pertinent technical resources

of other agencies. Although it might be possible

for a private organization to perform these functions, an advantage of using a Federal agency is

the ability of the Government to access the medical and other records from which many of the

data would come.

The Federal Government recently conducted a

substantial planning effort for a very similar data

collection activity. An interagency committee (including, NCHS, the Bureau of the Census, and

NIHR) was established and pretested a survey instrument for the Census Disability Survey. That

survey, using 100,000 disabled people and designed to collect information on functional abilities and disabilities, was to be a follow-on to the

1980 census. If the survey had been funded, and

if it had been successful, it would have provided

a substantial portion of the information needed

by Government agencies, industry, and other

groups. Lack of funds was cited as the reason for

the project’s not taking place.

The costs of option ID would vary considerably, depending on how extensively the current

survey techniques and activities of the Bureau of

the Census would have to be modified or expanded. It might be possible to create a mechanism whereby the private sector, including industry, advocacy groups, and foundations, could

contribute funds to the effort. Another dimension

along which costs would vary is the extent to

which new data are collected as opposed to old
Ch. 12—Policy Options ● 169

— — —

data analyzed to provide new answers. A recent funded effort to reevaluate existing data to get

study of national sources of data by the Bureau more accurate and more useful information. This

of Social Science Research (BSSR) concluded that alternative might be a fiscally easier first step.

the current sources in regard to disability data do A critical aspect of the success of this option not lend themselves to making national estimates.

According to BSSR, the data from these sources would be the effectiveness of the dissemination

of the generated data. Methods would have to be exhibit numerous inconsistencies. However,

because of the cost of designing and implementing developed to allow all relevant parties to easily

learn what would be available and how to gain new surveys, a second best alternative to gather- access to it. ing new data might be to establish an adequately

INVOLVEMENT OF DISABLED PEOPLE AND OTHER CONSUMERS

ISSUE 2

How can policies and programs be designed

to encourage or assure the effective involvement of disabled people and other consumers

in the development and delivery of technologies? In addition to providing information,

consumers should themselves be part of advisory and policymaking bodies to the maximum extent feasible.

In theory, assuring maximum effectiveness, efficiency, and relevance in the development and

application of technologies requires the extensive

involvement of those who will use the technologies—the consumers. In practice, however, there

is fairly little involvement.

There is no “correct” amount of consumer involvement, and there is no easy way to achieve

effective involvement. OTA found the area of

consumer involvement to be one filled with much

irony. Consumer involvement is one of the most

talked about aspects of the disability-related policy area—and everyone seems to believe in the

concept—but few satisfactory schemes to improve

the situation were suggested to OTA and few people or agencies appear to be taking aggressive steps

to put the concept into practice.

OTA found a number of reasons for inadequate

consumer involvement. One major reason is attitude. Although it is possible that, as a group,

people working in the disability area are less prejudiced against disabled people than are other people, it appears that prejudice still plays a significant role in the willingness and desire of people

in this area to interact with disabled people.

Another major reason is simply a bureaucratic

one. Program administrators or service delivery

individuals naturally seek to simplify their functions; adding another source of review, oversight,

or advice is not usually compatible with the bureaucratic outlook.

A third reason for lack of involvement is the

outlook of disabled people and handicapped people themselves. Despite dramatic changes in their

view of themselves and their abilities, many people still are reluctant to consult to, or get involved

in the administration of, programs addressing disabilities. When people do not see themselves as

having something to contribute, they are less likely to be asked to do so.

A fourth reason is the difficulty of identifying

“consumers. ” Should a program seek any disabled

person? A “representative” person? A representative from a consumer organization? From a coalition of organizations? How handicapped or disabled does the person have to be? One irony in

this area is that the more articulate and mobile

a disabled person is, the less handicapped (as defined in ch. 2) he or she likely is. Some people

with disabilities may not be “handicapped, ” since

they can perform life’s functions substantially as

well as a “nonhandicapped” person. Does this

make them less representative? Not necessarily,

but it makes the selection of consumers more difficult. Furthermore, consumers can include parents of disabled children, physicians and other

providers, bus riders (both disabled and nondisabled), etc. Do parents always represent the

needs and desires of their children and others’

children?
170 . Technology and Handicapped People

Another, very critical, reason for the inadequacy of consumer involvement is a lack of

knowledge about how to design the advisory

mechanisms that consumers would fit into in

order to ensure effective involvement. In equal

opportunity programs, in urban renewal, in education, and in many other policy areas, the country has sought to use consumer (affected party)

involvement. Many of these efforts have been less

than successful. That does not mean that they accomplished nothing, merely that they did not

come close to meeting expectations or their potential contribution to policy formulation or implementation.

The tactical goal of consumer involvement is

realism. Consumers and the groups or organizations they interact with should gain a more

realistic appreciation of the others’ needs and

capabilities. Designing a subway system that will

handicap many disabled people is perhaps worse

than designing a system with a plan for handling

disabled people in a particular way, without the

initial and continuing involvement of disabled

people. Even so, the latter approach may not be

the most effective or efficient way to make the

system accessible and may also generate a priori

resistance on the part of disabled people. Early,

extensive involvement of potential disabled riders

in planning for a new system might inject an element of realism: Subway designers and financers,

may gain a more realistic idea of the needs,

desires, and capabilities of disabled people and

be made aware of alternatives to their plan; and

disabled people may gain a more realistic idea of

Photo credif” Association of Hand/capped Artisfs

Confined to a wheelchair by cerebral palsy, Neita May Kimmel of Catawissa, Pa., has appeared before high school,

college, church, and club audiences to show and tell of her work and that of the Association of Handicapped Artists.

She has written a book, “Reaching for the Stars, “ in collaboration with Dr. Raymond Treon
Ch. 12—Policy Options ● 171

the design and financial constraints operating on

the subway builders, thus allowing them to suggest possible alternatives within the constraints.

OTA found that R&D of technologies often

proceeds with little input from potential users.

When involvement is sought, it maybe perfunctory. The everyday, realistic needs of users very

often do not find expression in the funding of

R&D by the Federal Government. Nor are consumers represented very often on the groups that

perform evaluations of technologies. (These shortcomings are addressed under the option area

below on the research, development, and evaluation of technologies.

Consumer involvement is critical at each stage

in the lifecycle of technologies. If Federal programs change their orientation from one of concern with simply the needs of consumers to concern with a mix of needs, desires, and capabilities

(see ch. 2), the lack of consumer involvement will

become even more critical. Besides R&D and evaluation activities, marketing, delivery, and financing programs need information that can best be

provided by those directly affected.

The options provided below for the issue area

of consumer involvement are organized by the

degree of formality involved. This does not mean

that they are necessarily mutually exclusive. More

formal action may be desired in one area of policy

(e.g., research project review, or consumer review

of technologies for coverage under Medicare) and

less formal actions in others (e.g., oversight hearings on compliance with individual education program (IEP) preparation and use).

OPTION 2 A

Congress could mandate formal consumer involvement in any or all Federal programs or

federally funded programs related to the development and use of disability-related technologies,

As mentioned above and in other parts of this

report, Congress has already mandated consumer

(“handicapped persons”) involvement through

several Federal laws. The National Council on the

Handicapped, for example, must have consumer

representation, and the individualized educational

program, individualized written rehabilitation

program, and individual habilitation plan processes are designed to involve disabled people or

their parents or other representatives in decisions

about education or rehabilitation.

Under this option, Congress could expand the

formal, statutorily based, requirements for the

participation of disabled people in the policy

development and implementation processes. Numerous agencies, including the Department of

Health and Human Services (DHHS), the Department of Education, VA, the Department of Labor,

and the Small Business Administration, could be

required both to involve disabled people directly

and to support consumer activities.

Direct involvement of consumers could be mandated in the process of R&D. (Option 3A also attempts to accomplish this. ) Consumers would provide valuable advice to the process of setting

research priorities, evaluating grant and contract

proposals, and evaluating reports of progress on

existing grants and contracts. The process of peer

review would thus be expanded to include a more

realistic appreciation of research needs and the

usefulness of results.

Agencies that finance the use of technologies

or that directly provide technologies to people

with impairments and disabilities (e.g., VA) could

set up panels, composed wholly or partially of

consumers, to review technologies that might be

included in reimbursement schedules or purchase

lists. Alternatively, the Health Care Financing Administration (HCFA), NIHR, and VA could jointly fund a private nonprofit organization of consumers to review proposed technologies.

In general, this option could involve a programby-program review to determine which programs

could use the various mechanisms for establishing

or expanding consumer involvement. As discussed

above, effective consumer involvement is difficult

to achieve. Thus, consideration should be given

wherever possible to the use of flexible mechanisms—e. g., combinations of advisory panels,

staff hiring, and contracts with consumer groups.

OPTION 2B

Congress could mandate an office of consumer involvement to monitor and provide

assistance to other offices dealing with technologies, and Congress could encourage all
172 ● Technology and Handicapped People

relevant agencies to expand consumer

involvement,

Instead of legislatively mandating consumer involvement in specific instances, Congress could

clearly encourage various agencies to expand their

consumer involvement activities. This option provides the advantage of flexibility-flexibility to

change as conditions change over time and as data

on the performance of involvement methods become available. Congress could encourage specific actions through oversight hearings, committee reports, and other means.

The obvious disadvantage of this option relative to the previous one is the difficulty of gaining voluntary compliance by the agencies. That

disadvantage is part of the rationale behind the

creation of an office of consumer involvement to

coordinate, monitor, and provide technical assistance regarding the involvement of disabled people. The legislative record, including hearings,

committee reports, and the law itself, would serve

as mechanisms for signaling the intent of Congress

to encourage involvement. Further, the office

could be required to submit annually to Congress

a report on all relevant executive branch activities.

Another reason for the creation of an office of

consumer involvement coordination and technical assistance is the desirability of effective consumer involvement. Achieving effective participation will not be easy; thus, providing agencies

with an office that possesses expertise and experience in techniques to encourage such participation could be very helpful. It would be a

small office with a modest funding level.

committee, could monitor all consumer involvement activities, keep standardized records of these

activities and any evaluations of their outcomes,

maintain lists of consumer organizations and individuals who may be called upon, advise agencies on methods of increasing consumer activities,

evaluate agency activities, and report on its own

and other agencies’ activities to Congress, the

President, the National Council on the Handicapped, and any other designated groups.

The office could also be responsible for testing

the feasibility of, and perhaps eventually implementing, a management information system based

on data from individualized plans (as described

in ch. 3) in order to evaluate and support involvement of consumers and consumer-generated information.

OPTION 2 C

Congress could encourage agencies to increase consumer involvement activities.

If Congress wishes to signal a concern about

the inadequate amount and quality of consumer

involvement activities, it could do so through

mechanisms less formal than legislation. These

mechanisms include, as noted above, oversight

hearings and records of hearings, and language

in committee reports accompanying related legislation. Such informal, though official, encouragement has some potential to effect change.

However, in view of tight agency budgets, bureaucratic inertia, and the difficulties inherent in

attempts to achieve fully useful consumer participation, it is likely that this option possesses

substantial disadvantages.

The proposed office, perhaps with the assistance of an interagency advisory or coordinating

RESEARCH, DEVELOPMENT, AND EVALUATION OF TECHNOLOGIES

ISSUE 3

How can R&D activities be organized and

funded to produce knowledge, techniques, or

devices that serve the needs of disabled people and relevant providers in accordance with

the magnitude of various problem areas and

opportunities? How can evaluation of present

and emerging technologies be organized to

provide consumers, providers, and policymakers with adequate information?

R&D activities and related evaluations must be

adequately funded, their potential contribution

to the ultimate goals of technology application

Kr - A must be recognized. and their organization be “– –— ,- U
Ch. 12—Policy Options • 173

— .-

such that it support the attainment of those goals.

In the area of disability-related technology,

however, as discussed in chapters 6, 7, and 10,

these needs for R&D and evaluation activities fall

short of being realized.

Excluding the general health research of NIH,

the amount of Federal funds spent on R&D related

to disabilities is approximately $66 million. (This

figure includes education and vocational-related

R&D, but not R&D in areas such as transportation or housing; even if these other areas were included, it is unlikely that the figure would be

substantially increased. ) In contrast, transfer

payments alone to disabled people from Government programs total $36 billion. Thus, R&D expenditures represent about one-fifth of 1 percent

of the transfer payments. If the other public and

private sector expenditures for services to disabled

individuals were added to the transfer payments,

the R&D budget would be an even smaller percentage. These comparisons are not meant to suggest that there is any way to identify a “correct”

amount to spend on disability- or handicaprelated R&D. (Total Federal health R&13 is about

2 percent of total national personal health care

expenditures—a figure that, at a minimum, is 10

times greater than that for disability R& D.)

Similarly, the level of evaluation activities is

extremely low. No figures for the total effort in

evaluation of disability-related technologies are

available. However, it is clear that relatively little formal clinical or life-use testing takes place

(see ch. 7). The reality of competition for funds

certainly affects the levels of both R&D and evaluation activities. For evaluation, though, a

perhaps equal factor is the lack of recognition

given to the potential contribution of evaluation

to decisions about the appropriate application of

technologies.

The organization and directions of R&D and

evaluation also contribute to the inadequate

number of useful technologies from these activities. The peer review systems in effect at the start

of the OTA study were not well organized (see

ch. 6), although that situation appears to be

changing. Inadequate attention is paid to what

will happen to the results of R&D once development is completed. The constraints and demands

of marketing, production, and consumer acceptance and preferences continue to play a relatively small part in the R&D process, though that situation also seems to be changing—slowly.

Methods of evaluation and analysis remain

underdeveloped. Recent work of NIHR and RSA

seems to be moving in promising directions, but

such work may not be a priority item for those

agencies. Cost-benefit and cost-effectiveness techniques and modified forms of comprehensive technology assessment show potential in this area, but

these methods are not being investigated thoroughly .

Complex, expensive technologies continue to

receive a large share of NIHR’s and other agencies’ R&D funding. Complex, expensive technologies are not inherently more or less appropriate

to concentrate on than simpler, inexpensive ones.

R&D and evaluation funding should be apportioned among different technologies according to

their potential for appropriate applications to the

needs of consumers; such funding should not be

apportioned on the basis of investigator interest

or how fascinating or futuristic a technology may

appear. The R&D process should be organized according to the needs it is designed to satisfy. More

attention could be given to the apportioning of

R&D funds by the potential payoff of various efforts in various technological areas. Some areas

need more basic research, others need development funds, and others have technologies that

need diffusion assistance, In short, attention

should be divided according to the state of maturity—’’readiness” —of the technologies and the

nature of the population in need. NIHR and other

agencies already have the authority to take many

of the needed actions; they do not have to wait

for legislative change. Agencies could, for example, allocate increased funds for low- or middle-technology fairs and contests. (Such fairs or

contests should not become ends in themselves,

but should be followed by publicity and publications summarizing the ideas generated. ) Also,

agencies could devote resources and attention to

development and testing of methods of evaluation.
174 ● Technology and Handicapped People

OPTION 3 A

Congress could mandate that consumers and

production and marketing experts be represented on R&D panels and evaluation panels.

This option explicitly recognizes that considerable involvement of the people and organizations who will play a major role in the subsequent

usefulness and diffusion of technologies should

take place early in the processes of R&D and evaluation. The objective of this option is the improvement of systems for conceiving new technologies, adapting existing ones to new applications, allocating R&D funds, and evaluating the

results of current or past R&D. Congress has already indicated its desire that consumers and other

groups be represented on the National Council on

the Handicapped. The council is involved in setting or recommending directions and policy for

NIHR. This body, however, cannot play a role

in each R&D allocation decision; nor can it serve

as the only source of consumer, production, and

marketing input to the entire R&D and evaluation process. Further, its influence is far less extensive in agencies other than NIHR.

Implementing this option would require extensive thought on the most effective ways of avoiding tokenism and conflict-of-interest situations for

private industry. Effective consumer involvement

has often been a goal of many public policy areas,

yet that goal is difficult to achieve. Questions have

been raised, for example, about the effectiveness

of consumer representation on the Food and Drug

Administration’s medical device classification

panels. However, the addition of consumer, production, and marketing experts to disabilityrelated R&D peer review and other groups may

be somewhat more effective. Many aspects of the

R&D process for technologies that will be used

by disabled people are amenable to experienced

consumer input. Consumers might inject a degree

of realism to the setting of R&D goals and priorities; evaluation criteria might be set to more

closely resemble the list of factors that lead to a

technology’s successful application. A consumer

does not have to be a mechanical engineer to

know that wheelchairs must fit through doors.

Production and marketing experts could help

the R&D process in several ways. For example,

the simple presence of such people on panels could

remind researchers and policymakers that the end

result of R&D is supposed to be (in most cases)

useful and cost-effective techniques and devices.

Also, their experience and expertise would allow

them to make suggestions concerning the evaluations that are necessary and the technological

characteristics (reliability, cost to produce, ease

of repairs, potential demand, flexibility) that

should be sought. Such experts might help in the

process of considering potential technologies,

whether complex or simple, in relation to their

eventual application and distribution.

Theoretically, no congressional actions are necessary for the adoption of this option. The executive branch agencies could implement it by themselves. If Congress finds that it is a desirable option, however, and agencies do not implement it

on their own, Congress could amend relevant laws

to mandate that R&D-related peer review and

other advisory groups have such representation.

OPTION 3B

Congress could mandate demonstration projects for the awarding of “production stage”

grants or contracts early in the R&D process.

The objective of this option is similar to that

of the previous one. The ultimate goal of most

R&D efforts is the development of technologies

or techniques that will be effective and will be distributed—i.e., successfully reach their market.

Small grants or contracts to nonprofit or profitseeking organizations to analyze the potential

market and to develop plans for the efficient production and diffusion of specific technologies may

help. This option is oriented to only a demonstration effort because of the many questions that exist

concerning the effectiveness of such a mechanism.

Enough potential exists for the idea to be given

consideration by Congress, however, and, if Congress believes it is warranted, for the idea’s trial

through pilot projects.

Congress could specify, either in renewal legislation or in appropriations language, its desire

that NIHR (and perhaps NASA and VA) develop

such a demonstration program.

One method of implementing the demonstration would be to select through a competitive
—— ————.

process a firm that is interested in the marketing

rights, for a specified time or area, for a particular

technology. That firm would use the contract

funds to examine the most efficient ways to produce the technology under development. It could

suggest changes in the technology or the populations for which the technology is being designed.

It could aid in any evaluations of the technology.

Essentially, this option is designed to set up a

strong positive incentive for organizations to produce and market technologies.

The grants or contracts should not be so large

that organizations would seek them without a real

desire to eventually market the technology, The

funds should be set at an amount that covers part

or most of the cost of the activities in conjunction with the R&D process, as listed above. The

hope for this option is that it will reduce the risk

and the cost of deciding to market the technology,

thus allowing a more intensive look at the appropriate potential applications of that technology.

OPTION 3C

Congress could appropriate specific increased

funds for evaluation of technologies.

This option follows from the discussion of the

relatively low level of funds and activities currently existing in the disability area. Although current economic realities naturally affect the viability of this option, it is important to remember that

the current level of funding for evaluation is extremely low and that the number of technologies

in need of clinical and other forms of evaluation

is increasing constantly (see ch. 7). Especially pertinent is the probability of an acceleration of the

number of technologies being developed. Many

observers speak of the “explosion” in technologies

for disabilities. Although the term “explosion” is

a dramatic one, it is clear that advances in solidstate electronics, other communications developments, new alloys, and medical advances are producing numerous new technologies. Some of these

may produce dramatic effects, others may turn

out to be useless, but most will produce benefit

under certain conditions—i. e., when applied appropriately in relation to their costs and risks. An

increased amount of funds will be needed to adequately assess these new technologies as well as

existing ones. The money, attention, and personCh. 12—Policy Options ● 175

—

nel will have to come from existing resources,

which are already scarce in the disability-related

R&D area, or from new funds specifically indicated for evaluation. Further, in the absence of

increased funding—from whatever source—of

evaluation, it is likely that program funds will not

be spent in as efficient a manner as might be

possible.

One drawback to this option is the immaturity

of analytical techniques for comparing costs,

risks, benefits, and social implications of disability-related technologies. The direct healthrelated benefits and risks can be estimated through

relatively sophisticated techniques (using controls

and statistical methods), but other effects are less

amenable to current methods of evaluation. Thus,

selection and implementation of this option may

require that some initial attention and resources

be devoted to the development of methods of

analysis. Additionally, if this option is adopted,

the very fact that increased funding, and therefore

researcher attention, will be devoted to the area

may mean that more work will be done on

methods.

OPTION 3 D

Congress could conduct oversight hearings

with the Department of Education to determine why the dissemination of information

on technologies remains inadequate,

OTA finds that the amount, usefulness, and accessibility of information on the characteristics,

availability, and performance of technologies are

not meeting the needs of users or potential users.

Interviews with researchers, administrators, and

consumers and with disabled people and nondisabled people; a review of the literature; and the

results of OTA’s public outreach survey all reveal

that dissemination of information is inadequate.

There are many partial explanations of the inadequate state of information flow that exists.

One, for example, is that the National Rehabilitation Information Center (NARIC) is relatively

new, and its ABLEDATA system is even newer.

Also, these activities have not had significant

amounts of funds appropriated. Thus, while

ABLEDATA appears to be a potentially model

system for disseminating information on assistive
176 . Technology and Handicapped People

devices, the number of devices about which information has been entered into the ABLEDATA

system and the amount of data on each such

device are still quite limited because of the small

size of the staff. Another reason is the generally

low level of information that exists. It is difficult

to disseminate what is not available or is of poor

quality, low relevance, or nonstandardized. This

is one reason that option 3C would assist in improving the performance of information dissemination activities, particularly for evaluation

information.

Furthermore, experts in the field disagree on the

best way to approach the collection and dissemination of data on disabilities and technologies.

Some people believe that a large, centralized data

system for the collection of masses of data is not

the most effective or efficient method. However,

others believe that such a single standardized system is necessary. The evidence available to OTA

indicates that one system is not the answer, given

the nature of disabilities and the disability field.

There is a wide variety of parties who have a number of differing information needs. Disabled people themselves represent one of the largest groups

of potential users of information. Yet the data

needs of disabled people are as varied as the disabilities, desires, and capabilities they possess.

Still, questions remain about the alternatives to

a single system.

Before any specific legislative actions are taken,

a number of questions could be addressed in oversight hearings. Such hearings could be designed

to bring out more clearly the reasons for the current situation and the administrative reactions to

that situation. Examples of questions that could

be explored in oversight are the following: Why

have agencies, especially in the Department of

Photo credit Barry Corbet Courtesy of North American Reinsurance Corp

Imogene Dickey of Buffalo, Wyo., uses a wheelchair for mobility. She and the chair ride on a Chair-EYacht or, for longer distances, a ramp-equipped van
Ch. 12—Policy Options . 177

—

Education, oriented their dissemination activities

to professional research institutions and similar

clients? What is being done to establish the criteria

for the design of a system to make information

available to disabled people directly? What

effects might be expected from an increase in

the funding levels for NARIC and, especially,

ABLEDATA? Why has little effort gone into the

standardization of evaluation and performance

data on technologies? How will disabled persons

not enrolled in public programs have access to information on technologies? Do agencies plan to

expand their evaluation activities in regard to the

performance of any existing systems for disseminating information, including NARIC (and specifically ABLEDATA) and any non-Federal systems?

Oversight questions could also address the factors cited above that make dissemination difficult

and explore what the agencies are doing to minimize the difficulties, or to compound them.

Depending on the results of any oversight hearings, Congress may then decide to take substantive legislative action or to encourage specific actions by the agencies.

FINANCIAL BARRIERS TO THE USE OF TECHNOLOGY

ISSUE 4

How can financial barriers to the acquisition

of technologies by disabled people be reduced, within reasonable constraints? Can the

levels and distribution of available funding

be made more appropriate in relation to the

level of the problems addressed?

Imperfections in the structure of delivery

systems need to be minimized. Inadequate and

sometimes illogical criteria for reimbursement or

payment for technologies should be reviewed and

where appropriate changed.

Despite eligibility for the public and nonpublic

programs that may pay for technologies to assist

them to function more independently and productively, a number of disabled people are denied

funding for particular technologies that are clearly

appropriate. As discussed in chapter 9, a primary

reason for the denial of funding—especially under

Medicare and Medicaid, but also under other programs—is that the technologies in question are not

strictly “medical” in nature and are therefore not

considered “necessary. ” A connection needs to be

made in these programs between paying for these

technologies and the potential independence or

productivity of disabled people. Another finding

is that when device technologies are funded, services necessary to their proper use (e. g., fitting,

training in correct usage, and maintenance) are

often not included in the funding. Furthermore,

OTA finds that decisions to fund certain technologies are sometimes based on the criterion of low

initial, short-term cost. Use of such a criterion

may fail to identify instances when a greater initial investment might result in decreased longterm costs and greater functional ability for the

individuals involved.

While most indigent disabled persons are eventually able to receive some assistance towards

meeting their needs, OTA finds that acquisition

of technologies in the period immediately following the onset of their impairment presents particular financial hardships. Those individuals who

must leave their employment because of their disability often lose the insurance coverage that

would have funded the technologies. Eligibility

for a Federal program may be established, but

benefits are provided only after a number of

months have elapsed. Earlier intervention through

funded technology would often serve to reduce

or ameliorate disabilities during the early stages

and thus lessen the long-term disability.

OTA finds that disabled people with enough

resources to prevent their participation in programs that pay for technologies also face serious

financial barriers to technology acquisition. There

are few available methods for financing the capital

outlays that are often necessary, and those few

that exist are available only in selected parts of

the country. Additionally, there is a need to expand the use of innovative ways to eliminate financial barriers to the use of technologies. One
178 ● Technology and Handicapped People

—

such method that shows promise is pooling of

devices by schools, voluntary health or disability organizations, hospitals, or similar organizations. This approach should be taken only with

great care, however, since pooling of obsolete or

simply “left over” technologies from other users

could lead to inappropriate matches between the

new user’s needs and the available pooled technologies.

OPTION 4 A

Congress could establish a loan guarantee

program with low interest financing (on an

income-related sliding scale) to assist disabled

people in device purchases.

This option would reduce or eliminate financial barriers to acquiring devices for individuals

who have the capability to generate the funds to

pay for the devices but who do not have the resources for the initial capital outlay. Either the

amount of money available for the loan or its interest rate, or both, would vary according to the

financial need of the individual beneficiaries. The

rationale for such a program is straightforward—

the loans would assist in the purchases of devices

which, in turn, would assist the individuals directly or indirectly to function independently, work,

and pay back the loan.

Pursuit of this option would likely involve a

minimum of Federal dollars. The program could

be State-administered, as is the program of federally guaranteed student loans for higher education. Adding this new program to a similar one

for administrative purposes would minimize the

funds spent on administration. The interest subsidies could be provided either by the Federal

Government directly or by the lending institutions

with tax incentives to do so. The actual Federal

funds necessary for coverage of defaulted loans

could be kept at a minimum as long as the beneficiaries of the program are selected to fulfill

criteria that would increase the likelihood of their

ability to repay the loans.

A significant implication of this option is the

public-private partnership likely to occur if it were

implemented. Such a partnership might be an important advantage in an era of pressures to constrain expenditures of public dollars.

OPTION 4 B

Congress could conduct oversight hearings on

ways to change criteria for reimbursement

under the Federal health insurance programs

with respect to technologies for disabled

people.

This option is developed from OTA’s finding

that disabled people eligible for coverage under

one of the Federal health insurance programs are

often denied payment for technologies that are not

considered strictly medical in nature, although the

technologies would improve the ability of the individuals involved to lead more independent, productive lives. The current patterns of reimbursement exist largely because of the history of these

programs as assistance for acute medical problems

rather than for the chronic problems faced by disabled people. The legislation for the programs

does not expressly prohibit payment for “nonmedical” technologies such as communication, education, and rehabilitative aids. Instead, the denials

usually occur at the State or regional level through

regulation.

A significant effect of the current “system” is

that in the short term, funds maybe saved, while

in the long term, a greater amount of total funds

is expended in, for example, income maintenance

payments or institutionalization expenses. In addition to the cost-related effects, there are psychological effects on the individuals involved—

the current system provides incentives for the

dependence of disabled people on public programs. Changes enacted should provide incentives

for independence.

Hearings on methods to change reimbursement

criteria to foster independence and productivity

would focus attention on the need to consider the

implications of policies in one area on other

related areas. Such hearings, if pursued, could include testimony by consumers and providers of

disability-related nonmedical technologies as well

as by representatives of HCFA, the State Medicaid

offices, and the contractors. Theoretically, the

hearings should provide alternative criteria for expanded reimbursement and suggested regulatory

changes to accomplish that objective which HCFA

and the States could then adopt. Congress could
Ch. 12—Policy Options • 179

then hold oversight hearings at a later date to

determine the effects of any adopted changes.

However, it is possible that legislative action may

be required to assure expanded reimbursement.

In that case, the actual law should include

safeguards against abuse of the expanded opportunities for reimbursement. One method would

be to detail the criteria for payment in the law

directly.

Finally, OTA finds that reimbursement for an

expanded variety of technologies should not be

pursued without accompanying reimbursement

for the services of those who select the technologies, those who fit them, and those who train

the users in their proper use. A portion of the

oversight hearings could address various criteria

for assuring that these essential related services

will be provided.

OPTION 4 C

Congress could conduct oversight hearings on

methods to improve health insurance coverage for persons leaving employment as a

result of disability.

The objective of this option is to reduce the

financial barriers to the acquisition of technologies

during the period immediately following termination from employment due to disability. The option stems from OTA’s finding that the systems

for assistance are least able to assist disabled people during that time, although some form of early

assistance may prevent or reduce assistance at a

later time. Most people who leave employment

lose health and medical insurance coverage formerly provided by their employers. Even if they

are eligible for public or private disability income

maintenance payments, they often do not have

the funds to purchase private individual coverage.

Since health and medical insurance programs are

a primary source of funding for technologies for

PERSONNEL ISSUES

ISSUE 5

How can Federal policies assure an adequate

number of well-trained personnel at all stages

disabled people, Congress could investigate ways

to close these gaps and examine the resultant benefits and costs to society of any administrative or

legislative action implemented.

One method that might be covered in oversight

hearings is the provision of Medicare coverage

during the 29-month period that individuals must

wait for Federal disability insurance. This method

should be used only for those people who do not

have private insurance or other financial resources

readily available to them. Criteria for providing

Medicare coverage (e.g., a likelihood of having

the severity of the disability reduced as a result

of early medical intervention), or methods for

measuring fulfillment of the criteria could be

topics for testimony. Another method that might

be covered is the provision of incentives to employers to provide health and medical insurance

coverage to their terminated employees for 12 to

29 months following termination for disabilityrelated reasons.

It is likely that legislative action will be necessary to implement any of the methods presented.

Such action could range from changes in the

Social Security Act to minor changes in tax deductions. The amount of Federal dollars will vary according to the source of the coverage (Federal or

private), the amount of coverage extended, and

the number of new beneficiaries. A potential

drawback to this option is that it is not designed

to improve coverage for those disabled from birth

or those disabled later in life who are not working at the time of disability onset. Furthermore,

unless changes in the criteria for reimbursement

under the Federal health insurance programs are

pursued as discussed in the previous option, there

is likely to be an inefficient expenditure of dollars

under any program arising from these hearings

as long as appropriate technologies are not

covered.

of the development and use of technologies?

Systems for R&D as well as delivery of services should provide incentives for the costeffective use of these personnel.
180 ● Technology and Handicapped People

Although the actual number of professionals

(disabled and nondisabled) working to develop

and apply technologies to disabled people has increased dramatically over the last 40 years, there

remains a shortage in a number of key areas. First,

there are too few rehabilitation researchers and

rehabilitation engineers. Although difficult to

quantify, this shortage can be described by the

primary reasons behind it. One, as discussed in

chapters 6 and 10, is the relatively low level of

funds spent on disability-related research in relation to the amount spent on general health-related

research. Another reason, as discussed in chapter

9, is a lack of reimbursement for the skills of these

professionals, particularly rehabilitation engineers. Together these reasons result in an unfavorable job market that may discourage prospective

students from entering those fields. Second, there

are too few allied health professionals, including

physical therapists, occupational therapists, orthotic and prosthetic technologists, speech therapists, vocational educators, and rehabilitation

counselors. As in the case of rehabilitation

engineers, the size of the shortage is difficult to

quantify, primarily because demand figures for

these professionals usually include the needs of

nondisabled clients as well as disabled persons.

It is clear, though, that legislation such as the

Education for All Handicapped Children Act, as

amended, has served to increase the demand for

allied health professionals. Furthermore, there is

a shortage in these areas of professionals who are

disabled themselves.

Finally, there is a shortage of rehabilitation physician specialists, although the specialty has been

in existence since 1948. Under the current reimbursement system, this shortage is often a key

one, because it is often the physician who must

prescribe a technology for it to be funded. OTA

explored the reasons behind this shortage and

found them to include a perception of the specialty

as one with low status, a relative lack of control

over the client’s treatment due to the wide range

of other professionals whose opinions must be

considered, a lack of professional orientation

towards the treatment of stable or deteriorating

conditions, and a lack of training in the undergraduate medical education on the management

of chronic disability.

Another key finding with respect to personnel

is that those providers who are permitted by the

structure of the delivery and funding systems to

select or prescribe technologies for disabled users

may not be the most appropriate ones to do so,

Traditionally, physicians have prescribed most of

the device technologies, partly because disabled

people often receive their first services through

the medical system and partly because the major

third-party payers will pay only for items that

carry a physician’s prescription. For certain technologies, physicians are the most appropriate providers to make the best selection for their clients.

However, for other technologies, particularly

those that are not medical in nature, other providers are equally or better qualified to make the

best selection. Yet if these other providers, including rehabilitation engineers, occupational therapists, and special education teachers, as well as

users themselves, cannot obtain funding, their

skills may not be fully utilized, and the overall

costs to society may be greater, Changes in physician curricula as well as in reimbursement policies

might alleviate this problem.

OPTION 5 A

Congress could appropriate funds for the

training of increased numbers of disabilityrelated personnel, including rehabilitation

engineers, rehabilitation medicine physician

specialists, and allied health professionals.

The objective of this option is to alleviate the

shortage of providers in the development and use

of technology. The option is weighted toward the

application end of the technology lifecycle, since

it is likely that researchers trained in related fields

could apply their basic skills to the disability field

if funds were available for new projects. Schools

eligible to receive the funds under this option

would include schools of engineering with specific

programs for rehabilitation engineering, medical

schools that sponsor residency programs in rehabilitation medicine, and schools for allied health

professionals. As under the existing programs for

training assistance (including public health, nursing, and physician traineeships), the funds could

be awarded directly to recognized programs but

applied to educate specific individuals. This
Ch. 12—Policy Options ● 181

mechanism allows nationally determined priorities

to affect the selection of both the educational programs and the individuals in them. Funds appropriated for these programs might come from

funds currently appropriated for physician training in specialties for which there is likely to be

an excess according to the recent report of the

Graduate Medical Education National Advisory

Committee (102).

A corollary objective of this option is to encourage disabled individuals to become rehabilitation professionals, particularly rehabilitation engineers. As noted throughout this report, the appropriate application of technologies to disabled people requires input from consumers at every phase

of the technology lifecycle. Because rehabilitation

engineering is a blend of technology development

and application, it is a key field in which to focus

Federal efforts to encourage the training of disabled professionals. Mechanisms to encourage an

increase in the number of disabled professionals

trained include requiring or creating incentives for

programs that receive Federal assistance to implement affirmative action programs.

This option will not be effective unless mechanisms for improving criteria for reimbursement

for nonmedical technologies are developed, as discussed under options 4B and 5C. Currently, a lack

of funding for nonmedical personnel who assist

disabled people to function independently has

made the job market undesirable for prospective

students. Training more professionals for these

positions would probably bean inefficient use of

scarce resources.

Finally, an alternative to training more rehabilitation medicine specialists is training physicians in other specialties to become “managers”

of the rehabilitation and habilitation of their

chronically disabled clients. This alternative recognizes that physicians are likely to influence

delivery and payment systems for at least the

short-term future. Funding courses in medical

schools or residency programs might assist other

physicians to better help their disabled clients.

An additional need in this area is for the training of existing disability-related and general health

professionals in the specialized skills necessary for

the appropriate use of technologies.

OPTION 5B

Congress could encourage volunteer participation in assisting disabled people by modifying tax incentives related to volunteer expenses and charitable contributions.

As with the previous option, the objective of

this option is to alleviate the personnel shortage

in various parts of the technology lifecycle. This

option suggests the use of volunteers to perform

some of the functions normally provided by professionals, to enhance the services provided by

professionals and to assist in implementing existing legislation that has, to date, not been appropriated enough funds for full implementation

(e.g., the Education for All Handicapped Children

Act). Although “volunteer participation” suggests

that no compensation is provided, the incentive

of reduced taxes is known as a relatively inexpensive method of providing compensation. This option assumes that the provision of such “compensation” will increase the supply of volunteers.

Although tax provisions currently exist both for

deduction of charitable contributions and volunteer expenses, strengthening these provisions

might increase volunteer participation. For example, the current deduction of 9 cents per mile of

volunteer travel by automobile might be increased

(for business travel, the current deduction is 20

cents).

Specific examples of possible volunteer assistance are: serving as information resources and

referral persons (a function often performed by

several types of allied health professionals);

assisting in planning and conducting education

and training programs on the application of existing and emerging technologies (a function performed by allied health professionals when performed at all); assisting in the evaluation of new

products and services (a function often neglected);

conducting self-help groups for peer counseling

(an activity best performed by disabled volunteers); and donating money or goods. Possible

strengthened tax incentives are: tax credits (instead

of deductions) for some portion of charitable contributions; deductions for more than 100 percent

of expenses incurred in providing services that

otherwise would not be provided because of

budget cuts; deductions for expenses incurred by
182 . Technology and Handicapped People

families who provide services to disabled members

of the family who would otherwise be served

under a publicly funded program; and deductions

for activities which might affect the environment

of disabled and handicapped people in a positive

way (e.g., an attitudes awareness campaign by

a television station).

Because the expenses incurred under this option, if adopted by Congress, would be primarily in the form of lost tax revenues rather than

direct outlays, few Federal dollars would be expended if volunteer activity were not increased.

A potential drawback to this “solution” to provider shortages, however, is the lack of quality

control over volunteer activities.

OPTION 5 C

Congress could mandate the funding of demonstration projects to test reimbursement for

technologies under Federal health insurance

programs by the types of skills provided

rather than by the types of providers.

This option is in response to OTA’s finding that

those providers who are permitted by the structure of delivery and reimbursement systems to

prescribe technologies for disabled people may not

always be the most appropriate ones to do so. In

some instances, therefore, a client may not receive

the proper assistance, or the skills of several providers (those able to prescribe and those unable

to) may be employed at more expense and loss

of efficiency than necessary or desirable. Another

problem is that services necessary for the proper

use of prescribed technologies are often not reimbursed under the Federal health insurance programs (see option 4B) if they are not provided by

a physician and are therefore not provided. So

far, there has been no proven method established to solve these problems, although numerous

suggestions have been made. A program of demonstration projects mandated by Congress is proposed under this option in recognition of the

untested status of this potentially helpful solution.

Because reimbursement experiments are common under the Medicaid and Medicare programs,

it would be logical that HCFA administer this

demonstration program. Congress could provide

the Secretary of Health and Human Services with

the authority to issue waivers from current Medicare and Medicaid rules to demonstration project participants when it next amends titles XVIII

and XIX of the Social Security Act.

In order to meet the objectives of providing

more appropriate, cost-effective services and

assuring that services are of an acceptable quality, Congress might want to limit the types of

services eligible for the program in its authorization of the project. Alternatively, each pilot project might limit the types of services reimbursed

by service to an area in which the project’s sponsors had already demonstrated quality and effectiveness. The funds appropriated for the demonstrations should be sufficient to assure quality; the

limits should be placed on the number of projects.
Appendixes
Appendix A.— Method of the Study

This assessment of “Technology and Handicapped

People” was preceded by a 3-month planning effort

that identified areas to concentrate on and established

a tentative study approach for the full study. The planning phase took place from July to September of 1980,

and resulted in a study proposal for the full assessment.

That proposal described the plan to examine the processes of research and development, evaluation, diffusion and marketing, and delivery and use of technologies for disabilities and to develop a conceptual

framework for decisions made regarding these processes. The proposal also presented examples of possible case studies.

The full assessment began on October 1, 1980. One

of the first tasks undertaken was the selection of the

advisory panel. Most of the studies undertaken at

OTA rely on the advice and assistance of an advisory

panel of experts. The advisory panel for a particular

assessment suggests source materials, subject areas,

case studies, and perspectives to consider; assists in

interpreting information and points of view that are

assembled by OTA staff; and suggests possible findings

conclusions based on the accumulation of information

produced by the study. The panel members review

staff and contract materials for accuracy and validity, discuss policy options of the study, and present arguments for and against the options and conclusions.

They do not, however, determine the report’s final

form and are not responsible for its content, direction,

or conclusions.

The advisory panel for the current assessment consisted of 18 experts with backgrounds in rehabilitation

medicine, sociology, innovation, economics, industry,

ethics, law, health policy, rehabilitation engineering,

psychiatry, consumer advocacy, and state level disability program administration. The panel was chaired

by Daisy Tagliacozzo of the University of Massachusetts. One member of the OTA Health Program

Advisory Committee, Melvin Glasser, also served on

the advisory panel.

The first panel meeting was held on January 14,

1981, in Washington, D.C. (the site of all three panel

meetings). Panel members discussed the overall study

plan of the assessment and helped OTA staff refine

the goals for the project. The panel examined the project boundaries and definitional issues and was key in

sharpening the study’s focus. The panel was also

helpful in reviewing the primary issue areas to be

covered and in providing suggestions of individuals

and organizations to contact for information and assistance. Case studies of specific technologies or disabling conditions were discussed, and the panel provided ideas of possible cases as well as criteria for final

case study selection. The case study approach was intended to illustrate problems and opportunities found

in the various stages of the development and use of

technologies for disabilities or impairments.

Following the panel meeting, a draft of a status

report was prepared. This draft was distributed to

panel members and to over 50 additional reviewers

who provided comments. The status report contained

only descriptive information; analysis and policy options were not included.

The second panel meeting was held on May 1, 1981.

At that meeting, the panel provided comments on the

revised draft status report and reviewed the progress

of the study. Considerable time was spent discussing

ways to analyze and synthesize the material that had

been collected and to develop policy options. In addition, the panel identified strengths, weaknesses, and

omissions in the work to that point. Finally, the panel

explored modifications in the emerging conceptual approach of the project. The final version of the status

report was issued in June 1981 to the Labor and Human Resources Committee and other selected Members of Congress.

Two subprojects were conducted during the spring

of 1981: 1) a public outreach effort, and 2) a workshop

on “Attitudes, Handicapped People, and Public Policy. ” The public outreach effort, which is described

in appendix D, was undertaken during April and May.

The workshop on attitudes and public policy was

held in Washington, D, C., on May 11 and 12. The goal

of the workshop was to explore the ways in which the

attitudes of and toward disabled people affect public

policy on resource allocation and technology development and use. There were more than 70 participants

from the academic, legislative, and program implementation communities. The workshop provided OTA

with a number of specific options for changes in programs and policies affecting disabled people.

Two preliminary workshops were held in preparation for the May 11 and 12 workshop. One was a general strategy or planning session and one was on legislative issues and disabled people, attended by lawyers specializing in civil rights. Also in preparation for

the workshop, several background papers were written by experts in different fields relating to attitudes

of and towards disabled individuals. Proceedings of

the May workshop, including the papers and a summary of conclusions reached by participants, WI1l be

available through the National Technical Information

Service. Copies for congressional use will be available

from OTA. Authors of the papers are listed at the end

of this appendix.

The initial, partial drafts of the main report were

185
186 ● Technology and Handicapped People

reviewed by OTA staff, special consultants, and advisory panel members. In certain instances, outside

reviewers were also asked to provide comments. The

first complete draft of the report was then sent to the

advisory panel.

The final meeting of the advisory panel occurred on

October 2, 1981. The entire meeting was spent reviewing the first complete draft on the main report. The

primary focus of the review was on the policy options

for congressional consideration.

The draft was then revised by OTA staff based on

the suggestions and comments of the advisory panel.

This second draft was then sent for a further round

of review by a much broader range of experts in a

diversity of settings: Federal agencies, private and nonprofit organizations, academic institutions, practicing

health professionals, consumer groups, and other selected individuals. Altogether, more than 180 individuals or organizations were asked to comment on

drafts of the main volume or individual case studies

of this assessment. The final draft of the main volume

of the report, containing the policy options, was

reviewed by approximately 50 individuals. After appropriate revisions were made based on comments

received, the report was submitted to the Technology

Assessment Board.

The project resulted in a number of documents: the

main report, of which this appendix is a part; a booklet that summarizes the main report; a status report

to Congress on the project, issued in June of 1981 and

fully encompassed by this main report; a series of

background papers of individual case studies and issue

papers; a background paper containing the proceedings of the workshop on technology, attitudes, and

public policy; and a xeroxed bibliography (prepared

for the workshop, by the Institute for New Challenges)

on attitudes toward and of disabled people, which is

available for inspection at the OTA offices,

The background papers containing the case studies

and issue papers were prepared both to provide information and ideas for the main report and to serve as

individual analyses of particular issues and technologies. The case studies, as well as the issues papers,

were selected according to several criteria:

●

●

●

Area of policy covered. Cases were selected to

cover more than just health-related disability

policy.

Several functional types of disability should be

represented, e.g., deafness, mobility limitations,

speech impairment, and learning disability. In addition, there should be cases or papers which address issues generic to all or many forms of disability.

Physical form of technology. Physical technologies (such as joint implants) should be included,

as well as process technologies.

• Complexity of technology. Both complex and

simple technologies should be represented.

● Purpose of technology. Prevention, treatment,

diagnosis, and rehabilitation should be represented.

● State of knowledge. There must be sufficient data

or information available for analysis.

● Policy relevance. There must be significant policy

questions involved in the cases selected.

The case studies and issue papers commissioned by

OTA are listed below with their authors, As mentioned, they are being issued in separate volumes and

will be available through either the Government Printing Office or the National Technical Information Service (or both):

●

●

●

●

●

●

●

●

●

●

“Passive Restraint Systems in Automobiles” by

Kenneth Warner.

“The Technology of Joint Implantation” by Dan

Lawson.

“Sheltered Workshops as an Employment Technology” by Jeffrey Rubin.

“Learning Disabilities” by Candis Cousins and

Leonard Duhl.

“Telecommunications Devices for Deaf People”

by Virginia Stern and Martha Reddan.

“Assistive Communication Devices for Severe

Speech Impairments” by Judith Randal.

“Mainstreaming in Education” by Nancy Carlson.

“Congress, the Courts, and Civil Rights for Disabled Persons” by Stephen Chitwood.

“Technology and Disability Programs and Rights:

A State Perspective” by Kent Hull.

“Techniques for Resource Allocation Decisions”

by Mark Ozer.

An additional background Paper, as mentioned

above, will include the papers presented at, or included

in the proceedings of, the May 1981 workshop on attitudes and technology. The topics of the papers and

their authors are:

●

●

●

●

●

●

●

“Cultural and Societal Views of Handicapped Individuals” by John Gliedman and William Roth.

“Denial of Emotional Needs to People with Handicaps” by Irving Zola.

“Communications Barriers Between ‘The

Able-Bodied’ and ‘The Handicapped’ “ by Irving

Zola.

“Values Informing U.S. Attitudes Toward Disabled Persons” by Ruth Purtilo.

“Disability: The Policymaker’s Dilemma” by Tom

Joe and Cheryl Rogers.

“Changing Structures in Society and Handicapped

People” by Joan Costello.

“The Media and Attitudes Toward Disabled Persons” by Harold Yuker.
Appendix B.— Legislative Overview — —

There is legislation, at both the State and Federal

levels, that pertains to most, if not all, aspects of the

disabled individual’s existence. Much of the legislation

is broadly drawn to include a range of policies that

go beyond affecting only disabled people. A significant part of this body of law, however, is aimed directly and solely at issues of specific relevance to the disabled people. To list or even summarize completely

the myriad laws, related regulations, administrative

actions, or pertinent court decisions is beyond the

scope of this overview.

According to a series of studies prepared for the Office of Handicapped Individuals (OHI), there are 11

general policy areas that encompass 52 specific legislative categories (58,62). * Those general policy areas

are:

● education;

● health;

● income maintenance;

• rights;

● transportation;

● miscellaneous (Internal Revenue Code, Copyright

Act, etc.);

● employment;

● housing;

● nutrition;

● social services; and

• vocational rehabilitation.

Many of the laws contained in these policy areas

are only peripherally related to the needs of disabled

people. A few of the laws, though, are directly concerned with major issues that dramatically affect the

lives of the disabled people. Examples of these laws

are:

● Developmental Disabilities Assistance and Bill of

Rights Act–Public Law 88-164; Public Law

91-517; Public Law 94-103; and Public Law

95-602.

● Vocational Education Act of 1963—Public Law

88-210; Public Law 90-576; Public Law 94-482;

and Public Law 95-40.

● The Rehabilitation Act of 1973—amended by

Public Law 93-516; Public Law 94-230; and Public

Law 95-602 (the Rehabilitation, Comprehensive

Services and Developmental Disability Amendments of 1978).**

‘The three studies prepared tor OHI that are relled on for this d]scuss]on

are Key Federal Reguiatlons Affecting the Handicapped, 1977-78, A Summdry of Selected I.eglslatlon Relating to the Hanchcapped 1 Q77-78 ‘ and

‘ Summary ot Exlstlng Le~]sldt]on Relating to the Handicapped “ Any ot three

stud]cs e~peclally the Idst, WIII provide a much more thorough dccount LJi

the relevant Ieglslat]on or regulatmn5 lnvolvecf In this ared

‘‘ I)ubli{ [ aw 95-002 ]s espt,( Iall~ notew(~rthv and rele~ant to this study

Among the many area~ ot rehabll)tatlon pollc~’ and adm)nlst rat l~e locus that

● The Architectural Barriers Act and Amendments—Public Law 90-480 and Public Law 90-480

and Public Law 91-205.

● The Housing and Community Development

Amendments—Public Law 95-128 and Public Law

95-557.

● The Education of the Handicapped Act and

Amendments—Public Law 94-142; Public Law

95-49; and Public Law 95-561.

● The Comprehensive Employment and Training

Act Amendments—Public Law 95-44 and Public

Law 95-524.

● The Social Security Act Amendments—Public

Law 95-171; Public Law 95-216; Public Law

95-291; Public Law 95-600; and Public Law

96-265.

OHI points out that the numerous legislative initiatives summarized in its reports represent “only the

most salient regulation (legislation) with the broadest

implications for [disabled] children and adults” (62).

It goes on to point out that “this summary is intended

to-offer a brief overview of Federal policies affecting

[disabled] citizens issued during 1977 and 1978” (62).

One must keep in mind that there is an equal, if not

greater, body of law at the State and local levels that

relates to disabled persons. The sheer volume of legislation in this area is awesome. Not only is the amount

formidable, but the laws can vary from State to State

and may be similar or contradictory to the Federal initiatives. Increasingly though, the States are trying to

become synchronized with the Federal legislation in

order to qualify for Federal moneys. This tendency

might be decreased if programs for disabled persons

are decentralized or converted to block grants (whereby the individual States would be far less limited in

how the funds are used). An example of an area where

this bilevel approach to legislation has resulted in

unclear program definitions and goals are the programs serving disabled children. In other areas, such

as due process procedures and the administration of

the Rehabilitation Act, the Federal-State relationship

is fairly consistent.

Charles Bubany of Texas Tech Law School has described the Federal and State laws as falling into three

general categories (21):

● special protective legislation and programs provided by law to compensate persons for disability;

rt rea~tlrmed and i n]tiated are the creation (~t the Natlomd inst itut~, Ot } /an

dI( appeal Research, establishment d the National Council on the Handicapped, the 501, 502, 503, and 504 sect ions under title V that e~tab]lshed and

con/ lrmed a number of C]VI1 rights i(~r disabled people the c rrat Ion ot the

Independent l]v]ng centers grant program< and the en)plo}rment provlslon+”

of title \“] ( 214 I

187
188 ● Technology and Handicapped People

● restrictions imposed either directly or indirectly

by law which discourage participation of the disabled in “normal” community life [quotation

marks added]; and

● affirmative action to provide the opportunity or

encouragement for full participation in community life.

The rehabilitation system has had an inconsistent,

overlapping, and piecemeal collection of programmatic goals grafted on to it over the years. Traditionally, most rehabilitation programs are directed towards

serving those who were thought to be most readily employable, The remainder of the disabled population

was largely ignored. The broadening of definitions and

goals by the recent legislation in the independent living area has expanded the scope of the habilitation system to include a wider range of disabled people. However, these changed definitions have largely applied

only to the independent living programs. The bulk of

the legislation though still serves specified categories

of individuals. It is too early to tell whether these remaining categories and areas of legislation will also

be broadened in scope and definitional boundaries.

The relationship of the disabled population, in all

its variations, to society in general is changing in

numerous ways. Public policy is shifting away from

the paternalistic “taking care of” approach to addressing handicap-related issues. Increasingly, the country

is moving towards an approach where assistance or

protection (in the civil rights sense) is provided to individuals in an effort to equip them with the necessary

tools to move into a more independent environment.

These general policy directions are fairly clear, yet the

supporting systems to assure their implementation are

still being formed. However, it is possible to provide

a sense of where and how Federal legislation will affect the disabled population and the rehabilitation system. A good place to start is with the “civil rights” sections of the Rehabilitation Act of 1973 and its 1978

amendments. *

Section 504 of the Rehabilitation Act, as amended,

contains an explicit provision protecting the rights of

persons with disabilities in this country. The purpose

of this section is to (113):

prevent discrimination against all disabled individuals . . . in relation to Federal assistance in

employment, housing, transportation, education, health

services, or any other federally-aided programs . . . .

The foundation of section 504 is almost identical to

the antidiscrimination language of section 601 of the

● Kent Hull, In his bcx)k The Rtghts of Physically Handmzpped People, is

the source of a significant portion of the discussion related to the specific

legislative initiatives in this area (113). This book provides an extensive and

Illuminating anatysls of the legislative, administrative, and judicial Issues

revolved.

Civil Rights Act of 1964 and section 901 of the Education Amendments of 1972 (113). Section 503 of the

same law requires affirmative action in the employment and advancement of qualified disabled individuals by many federally funded contractors. For the

definitional purposes of section 504, a “handicapped”

person is anyone who:

● has a physical or mental impairment that substantially limits one or more major life activities;

● has a record of such an impairment; or

• is regarded as having such an impairment.

The dark side of this legislative progress is the slowness and confusion that has characterized the Federal

Government’s efforts at implementing these provi-.

sions. Each Federal department is responsible for carrying out the responsibilities included in these laws. It

took the Department of Health, Education, and Welfare (now Health and Human Services) 4 years

(1973-77) to announce regulations for its programs. It

also had responsibility for the development of guidelines for other departments in their implementation of

section 504 requirements. It took 5 years (1973-78) to

announce guidelines for the process of developing

regulations for the other departments and agencies

(113). It should be mentioned, however, that no funds

were authorized or appropriated for the implementation of section 504. And the Department of Health,

Education, and Welfare is not an isolated example of

the problems and delays involved in implementing the

goals and programs required by these provisions.

A piece of legislation that preceded the Rehabilitation Act is the Architectural Barriers Act of 1968

(amended in 1976). Without the implementation of the

goals set out in this legislation, subsequent civil rights

measures, employment acts, or transportation laws

lose their effectiveness very quickly. One of the most

fundamental barriers to disabled individuals’ full participation in society is accessibility or the lack thereof

to the buildings and facilities they must use. Without

access, they are in effect subjected to the most severe

form of discrimination. The mandate of the Architectural Barriers Act was to ensure that (113):

Every building designed, constructed, or altered after

the effective date of a standard issued under this chapter

which is applicable to such building, shall be designed,

constructed, or altered in accordance with such standards.

In essence, the general goal of the legislation was

to open up federally owned or operated buildings and

facilities to disabled people. The law excluded privately

owned buildings or facilities unless they were related

to a federally funded operation. The direction and general administration of this act comes from the General Services Administration, the Department of

Health and Human Services, the Department of Hous-
Appendix B—Legislative Overview . 189

ing and Urban Development, the Postal Service, and

the Department of Defense. Each has various jurisdictional concerns for which it is responsible. The legislation in this area receives much of its criticism over

three general points: definitional issues, uneven interpretation and use of discretionary powers, and implementation efforts that proceed at glacial speeds.

Education, transportation, and employment are also

areas of intense concern that have been addressed by

Congress. The focus on education of disabled children

dates back many years. The most recent initiatives are

updates and summaries of those previous efforts. The

Education for All Handicapped Children Act of 1975

and its amendments, Public Law 95-49 and Public Law

95-561, are the primary sources of Federal aid to State

and local school systems for instructional and support

services to disabled children. This legislation has stimulated the debate over what should be the “least restrictive environment” for disabled children in school

systems.

In the area of transportation, a number of amendments to the Urban Mass Transportation Act of 1974

(Public Law 91-453, Public Law 93-87, Public Law

93-503, and the most recent—Public Law 95-599) have

provided authorization to eligible local jurisdictions

to plan and design mass transportation facilities to

serve, or be usable, by the elderly or the disabled.

These authorizations did not mandate action, but the

arrival of section 504 of the Rehabilitation Act of 1973

did so. Dramatic battles have been in progress since

that date. The employment picture is similar. There

are the Comprehensive Employment and Training Act

of 1973 (CETA) provisions that classify disabilities in

the eligible column for CETA training programs—job

corps, Employment Demonstration Programs, etc.

There are also provisions in the Small Business Act

of 1953 (amended by Public Law 92-595 and Public

Law 95-89) that award assistance to nonprofit sheltered

workshops and that assist disabled individuals who

want to set up businesses, if such funds are not available from other sources. There is an extensive FederalState system of vocational rehabilitation that is designed to provide disabled persons the appropriate

training, support services, etc., and help place them

into remunerative employment. Other than vocational

rehabilitation programs, the remainder of the Federal

efforts are fairly passive. Once again, sections 501,

503, and 504 of the Rehabilitation Act of 1973 changed

the Federal Government’s relationship to the disabled

population. These sections continue to be instrumental in moving the Federal Government and a portion

of the private sector towards ending discriminatory

employment practices in this area. These sections also

mandate an affirmative hiring approach in the employment areas covered by the legislation.

The changes in the law and in society over the last

decade have been many and significant. Actions have

been taken at the local, State, and Federal levels. But

there is still a long distance to travel before the country even approaches the goals established by these various pieces of legislation. The political, hence societal,

policy agenda has been established for bringing the

population with disabilities into the flow of American

society. Putting in place adequate mechanisms and systems to implement the legislation, however, is a task

that remains.
Appendix C.— Glossary of Acronyms, Glossary of Terms,

Acknowledgments, Health Program

Advisory Committee Members

Glossary of Acronyms

ADAMHA

AIS

APTD

ATCB

BRP

BSSR

CBA

CBO

CEA

CETA

CIL

COMSAT

CRS

DD

DHEW

DHHS

DME

DOD

DOE

DOL

DOT

FAI

FDA

G AO

GMENAC

HCFA

HEW

HHS

HP

HRA

190

Alcohol, Drug Abuse, and Mental

Health Administration (PHS)

abbreviated injury scale

Aid to the Permanently and Totally

Disabled Program

Architectural and Transportation

Compliance Board

Beneficiary Rehabilitation Program

(SSDI)

Bureau of Social Science Research,

Inc.

cost-benefit analysis

Congressional Budget Office

(U.S. Congress)

cost-effectiveness analysis

Comprehensive Employment and

Training Act

center for independent living

(also can be ILC)

Communications Satellite Corp.

Congressional Research Service

(Library of Congress)

developmental disability (ies)

Department of Health, Education,

and Welfare (now DHHS)

Department of Health and

Human Services

durable medical equipment

Department of Defense

Department of Education

Department of Labor

Department of Transportation

functional assessment inventory

Food and Drug Administration

(PHS)

General Accounting Office

(U.S. Congress)

Graduate Medical Education

National Advisory Committee

Health Care Financing

Administration (DHHS)

See DHEW

See DHHS

habilitation plan (developmental

disabilities)

Health Resources Administration

(PHS)

HSA

HSQB

HUD

ICF/MR

IDE

IEP

IHP

ILC

IRSG

IWRP

LRE

NARF

NARIC

NAS

NASA

NBS

NCHCT

NCHS

NCHSR

NEI

NHTSC

NIA

NIADDK

NICHD

NIH

NIHR

NINCDS

NSC

NSF

.

Health Services Administration

(PHS)

Health Standards and

Quality Bureau (HCFA)

Department of Housing and

Urban Development

Intermediate Care Facilities for the

Mentally Retarded

investigational device exemption

individualized educational program

individualized habilitation plan

independent living center

(also see CIL)

Insurance Rehabilitation

Study Group

individualized written rehabilitation

program

least restrictive environment

National Association of

Rehabilitation Facilities

National Rehabilitation Information

Center

National Academy of Sciences

National Aeronautics and

Space Administration

National Bureau of Standards

National Center for

Health Care Technology (OASH)

National Center for Health Statistics

(OASH)

National Center for Health Services

Research (OASH)

National Eye Institute (NIH)

National Highway Traffic Safety

Administration

National Institute on Aging (NIH)

National Institute of Arthritis,

Diabetes, and Digestive and

Kidney Diseases

National Institute of Child Health

and Human Development (NIH)

National Institutes of Health (PHS)

National Institute of Handicapped

Research (DOE)

National Institute of Neurological

and Communicative Disorders and

Stroke (NIH)

National Safety Council

National Science Foundation
Appendix C—Glossary of Acronyms, Glossary of Terms, Acknowledgements, Health Program Advisory Committee Members ● 191

— — .

OASH

OHDS

OHI

OHRST

OPPR

OSE

OSMA

OTA

PHS

R&D

REC

RER&D

RI

RSA

RTC

SBA

SGA

SSA

SSDI

SSI

SSI-VR

TASH

VA

VDI

VR

Office of the Assistant Secretary for

Health (DHHS)

Office of Human Development

Services (DHHS)

Office for Handicapped individuals

(DOE)

Office of Health Research, Statistics

and Technology (OASH)

Office of Policy Planning and

Research (HCFA)

Office of Special Education

(Department of Education)

Office of Small Manufacturers’

Assistance (FDA)

Office of Technology Assessment

(U.S. Congress)

Public Health Service (DHHS)

research and development

rehabilitation engineering center

(NIHR)

Rehabilitation Engineering Research

and Development Program (VA)

rehabilitation indicators

Rehabilitation Services

Administration (DOE)

research and training center

(NIHR); sometimes seen as R&TC

Small Business Administration

substantial gainful activity

Social Security Administration

(DHHS)

Social Security Disability Insurance

Program (SSA)

Supplemental Security Income

Program (SSA)

Supplemental Security IncomeVocational Rehabilitation Program

(SSA)

Technical Aids and Systems for the

Handicapped, Inc.

Veterans Administration

vehicle deformation index

vocational rehabilitation

Glossary of Terms*

Allied health provider: A specially trained and licensed (when necessary) health worker who provides direct services to clients which supplement,

complement, or support the professional functions

of physicians, dentists, podiatrists, or nurses. Types

● OTA wc)uld [Ike to thank Nlarlvn Kornbluh (>f the C(~ngresslona[ Research

Service tor shar]ng bI\ gl(lssary of dlsabllltyrelated terms w]th us

of allied health providers include physical therapists,

speech therapists, occupational therapists, rehabilitation counselors, rehabilitation engineers, orthotic

and prosthetic technologists, and social workers.

Appropriate technology: A term used in this report

to mean the appropriate development and, especially, application of technology to eliminate or reduce

an impairment, disabling condition, or a handicapping condition. It does not refer to the intermediateor low-capital technology movement.

Attendant care services: Services that are provided by

an attendant in assisting a severely disabled person,

usually a person needing a wheelchair for mobility,

with basic activities of daily living so that the disabled person may live more independently.

Comprehensive technology assessment: See “technology assessment .“

Cost-benefit analysis (CBA): An analytical technique

that compares the costs of a project or technological

application to the resultant benefits, with both costs

and benefits expressed by the same measure. This

measure is nearly always monetary.

Cost-effectiveness analysis (CEA): An analytical technique that compares the costs of a project or of alternative projects to the resultant benefits, with cost

and benefits/effectiveness not expressed by the same

measure. Costs are usually expressed in dollars, but

benefits/effectiveness are ordinarily expressed in

terms such as “lives saved, “ “disability avoided, ”

“quality-adjusted life years (QALYs) saved, ” or any

other relevant objectives. Also, when benefits /

effectiveness are difficult to express in a common

metric, they may be presented as an “array. ”

Development disability (DD): A severe, chronic disability that is attributable to mental or physical impairments that are manifested before the person

reaches age 22, which is likely to continue indefinitely, and which results in substantial functional limitations in three or more of the following categories:

self care, receptive and expressive language, learning, mobility, self-direction, capacity for independent living, and economic sufficiency.

Device (medical): Any physical item, excluding drugs,

used in medical care (including instruments, apparatus, machines, implants, and reagents).

Disability: A term used to denote the presence of one

or more functional limitations. A person with a disability has a limited ability or an inability to perform one or more basic life functions (e. g., walking) at a level considered “typical .“

Drug: Any chemical or biological substance that may

be applied to, ingested by, or injected into humans

in order to prevent, treat, or diagnose disease or

other medical conditions.
192 ● Technology and Handicapped People

Durable medical equipment (DME): A category for reimbursement under Medicare, part B, which refers

to equipment that: 1) can withstand repeated use,

2) serves primarily a medical purpose, 3) is not generally useful in the absence of an illness or an injury, and 4) is appropriate for use in the home.

Examples of DME include hospital beds and accessories, wheelchairs and accessories, canes and

crutches.

Efficacy: The probability of benefit to individuals in

a defined population from a medical technology applied for a given medical problem under ideal conditions of use.

Functional limitation: An inability to perform some

basic life activity (e.g., walking, grasping, or speaking) at a “typical” level due to an underlying physical

or medical condition.

Habilitation: The process of the combined and coordinated use of medical, social, educational, and vocational services for training individuals born with

limited functional ability to attain the highest possible level of functional ability. Also called “rehabilitation. ”

Handicap: Inability to perform one or more life functions (e.g., eating, conversing, working) at a “typical” level, caused by the interaction of an individual’s disability with the physical and social environments in which that person is functioning or

expected to function.

Impairment: A physiological, anatomical, or mental

loss or “abnormality” caused by accident, disease,

or congenital condition. An impairment may be the

underlying cause of a disability.

Incidence: In epidemiology, the number of cases of disease, infection, or some other event having their

onset during a prescribed period of time in relation

to the unit of population in which they occur. It

measures morbidity or other events as they happen

over a period of time.

Independent living center (ILC): A program that provides or organizes services to assist disabled individuals experience independent living (the ability to

make one’s own decisions and assume responsibility for one’s own life), including integration into the

community to the maximum extent feasible or desirable, and access to support services in order to

maintain independence.

Least restrictive environment (LRE): A concept incorporated into the Education For All Handicapped

Children Act that means that handicapped children

must be educated to the maximum extent appropriate with nonhandicapped children. Appropriateness

is the factor that determines whether a child will be

educated in the regular classroom or in another setting such as a special classroom, a special (separate)

school, at home, or in a hospital or other institution.

Mainstreaming: A process that assists or enables disabled persons to live, work, and learn in the same

settings as ncndisabled persons. The term is often

used to refer to the process of educating disabled

children with nondisabled ones in the same classrooms and schools. A more accurate term might be

“integration .“

Medicaid: A Federal program that is administered and

operated individually by each participating State

government that provides medical benefits to certain low-income persons in need of health and medical care. Disabled individuals who receive Supplemental Security Income (SSI) payments (see SSI)

also receive Medicaid benefits.

Medical technology: The drugs, devices, and medical

and surgical procedures used in medical care, and

the organizational and support systems within

which such care is provided.

Medicare: A nationwide, federally administered health

insurance program authorized in 1965 to cover the

cost of hospitalization, medical care, and some related services for eligible persons over age 65, persons receiving Social Security Disability Insurance

(SSDI) payments for 2 years (see SSDI), and persons with end-stage renal disease. Medicare consists

of two separate but coordinated programs-hospital

insurance (part A) and supplementary medical insurance (part B). Health insurance protection is

available to insured persons without regard to

income.

Morbidity: A measure of illness, injury, or disability

in a defined population, It is usually expressed in

general or specific rates of incidence or prevalence.

Sometimes used to refer to any episode of disease.

See also “mortality (death), ”

Mortality (death): A measure of deaths, used to describe the relation of deaths to the population in

which they occur. The mortality rate (death rate)

expresses the number of deaths in a unit of population within a prescribed time.

Prevalence: In epidemiology, the number of cases of

disease, infected persons, or persons with disabilities

or some other condition, present at a particular time

and in relation to the size of the population. It is

a measure of morbidity at a point in time.

Procedure (medical or surgical): A medical technology

involving any combination of drugs, devices, and

provider skills and abilities. For example, an appendectomy may involve at least drugs (for anesthesia), monitoring devices, surgical devices, and

physicians’, nurses’, and support staffs’ skilled

actions.
Appendix C—Glossary of Acronyms, Glossary of Terms, Acknowledgments, Health Program Advisory Committee Members ● 193

— .

Rehabilitation: The process of the combined and coordinated use of medical, social, educational, and vocational services for training or retraining individuals, who have become disabled, to the highest

possible level of functional ability. Also called “habilitation. ”

Rehabilitation engineer: A professional who coordinates various concepts, techniques, and developments in engineering, psychology, systems information, medical and rehabilitation practice, and information regarding diseases or handicaps, to assist disabled persons in the rehabilitation process by providing specific solutions to problems these individuals face in utilizing their abilities.

Rehabilitation engineering center (REC): A research

center devoted to research in specific rehabilitation

engineering topics funded by the National Institute

of Handicapped Research. Since 1971, 12 RECs have

been established in the United States, with 3 collaborating centers overseas.

Rehabilitation physician specialist (physiatrist): A physician who has completed postgraduate medical education in the specialty of rehabilitation medicine and

who provides medical rehabilitative services and organizes systems of care in the community, obtains

resources for clients and programs, conducts

research, and provides education on disability.

Research and training center (RTC): A universitybased research center funded by the National Institute of Handicapped Research that performs research in one of the following areas of the rehabilitation field—medical rehabilitation, mental retardation rehabilitation, vocational rehabilitation,

deafness rehabilitation, blindness rehabilitation, and

mental health rehabilitation—and conducts training

programs for rehabilitation and health care professionals in the specialty area.

Related services: An entitlement under the Education

for All Handicapped Children Act to available technologies in the form of aids and services that are necessary for educating a disabled child in the least restrictive environment (LRE). (See LRE. )

Risk: A measure of the probability of an adverse or

untoward outcome’s occurring and the severity of

the resultant harm to health of individuals in a defined population associated with use of a medical

technology applied for a given medical problem

under specified conditions of use.

Risk-benefit analysis: The formal comparison of the

probability and level of adverse or untoward outcomes versus positive outcomes for any given action. The comparison of outcomes does not take into

consideration the resource costs involved in the intended action.

Safety: A judgment of the acceptability of risk (see

above) in a specified situation.

Special education: The process of teaching children

with disabilities, particularly children who have

emotional illness, specific learning disabilities, or

mental retardation. Also refers to the process of

teaching children with unusually high intellectual

potential.

Social Security Disability Insurance (SSDI): A Federal

social insurance program for workers who have contributed to the social security retirement program

and become disabled before retirement age. Beneficiaries receive monthly cash payments.

Substantial gainful activity (SGA): An earnings test

used in the determination of eligibility for the Social

Security Disability Insurance or Supplemental Security Income programs. In order to be considered

disabled under either program, an individual must

have a severe impairment and cannot be engaging

in SGA, or earning more than $300 per month.

Earnings above the SGA limit automatically cause

a determination of “not disabled. ”

Supplemental Security Income (SSI): A Federal income

support program for low-income disabled, aged,

and blind persons, Eligibility for the monthly cash

payments is based on the individual’s current status

without regard to previous work or contributions

to a trust fund. Some States supplement the Federal

benefit.

Technology: The application of organized knowledge

to practical ends.

Technology assessment: A comprehensive form of policy research that examines the technical, economic,

and social consequences of technological applications. It is especially concerned with unintended, indirect, or delayed social impacts. In health policy,

the term has also come to mean any form of policy

analysis concerned with medical technology, especially the evaluation of efficacy and safety. T h e

comprehensive form of technology assessment is

then termed “comprehensive technology assessmerit. ”

Vocational rehabilitation: In general, the process of

utilizing services and assistive devices to enable a

disabled individual to enter or return to gainful employment. Specifically, vocational rehabilitation

refers to the program authorized by the Rehabilitation Act of 1973, as amended, which provides

Federal grants to State rehabilitation agencies to provide vocational rehabilitation services. The Vocational Rehabilitation program is administered at the

Federal level by the Rehabilitation Services Administration.
194 ● Technology and Handicapped People

Acknowledgments

This project has benefited from the advice of a great

many people in addition to the Advisory Panel, the

Health Program Advisory Committee, special consultants, and contractors. The staff would like to especially thank the following individuals for their assistance and support.

Bruce Archambault, Council of State Administrators

of Vocational Rehabilitation

Association of Handicapped Artists, Inc.

Robert L. Beadles, Research Triangle Institute

Pat Berilgen, Great Oaks Center

Carol Berman, Department of Education

Harold Buzzell, Department of Education

David Campbell, DC+ - Designs in Sound

Jeffrey Cohn, Washington, D.C.

Frank Coombs, Veterans Administration

Barry Corbet, Golden, Colorado

Joan Costello, University of Chicago

Thomas Cowley, Phonic Ear, Inc.

W. Palmer Dearing, Blue Cross and Blue Shield

Associations

Thomas Drury, National Center for Health Statistics

George Engstrom, National Institute of Handicapped

Research

Barbara Finberg, Carnegie Corp.

Richard Flaherty, Health Industry Manufacturers

Association

Donald Galvin, Michigan State University

Margaret Giannini, Veterans Administration

John Gliedman, New York City

Anna C. Hofmarm, Phonic Ear, Inc.

John Kal, Federal Aviation Administration

Richard LeClair, National Institute of Handicapped

Research

Harriet Loeb, Washington, D.C.

David Martin, Health and Welfare Canada

Howard Matthews, Senate Committee on Labor and

Human Resources

Richard Melia, National Institute of Handicapped

Research

Michael Mittelmann, Aetna Life & Casualty

Danny Naylor, Great Oaks Center

Seymour Perry, National Institutes of Health

Roger Peterson, Institute for Economic Development

Ronald Philips, National Aeronautics and Space

Administration

Margaret Porter, Department of Health and Human

Services

Ruth Purtilo, Massachusetts General Hospital

James Reswick, National Institute of Handicapped

AResearch

Reese Robrahn, American Coalition of Citizens With

Disabilities

Cheryl Rogers, University of Chicago

David Saks, Organization for the Use of the Telephone

1. Richard Savage, Yale University

Eugene Schneller, Union College

Edward Sontag, Department of Education

Joseph Traub, National Institute of Handicapped

Research

Donald Vargo, National Aeronautics and Space

Administration

Claude Whitehead, New Jersey Association of

Rehabilitation Facilities

George Willingmyre, Health Industry Manufacturers

Association

Ronald Wilson, National Center for Health Statistics

Harold Yuker, Hofstra University

Irving Zola, Brandeis University

Health Program Advisory

Committee Members

Sidney S. Lee, Chairman

Vice President, Michael Reese Hospital and Medical

Center

Stuart H. Altman

Dean, Florence Heller School

Brandeis University

Robert M, Ball

Institute of Medicine

National Academy of Sciences

Lewis H. Butler

Health Policy Program, School of Medicine

University of California, San Francisco

Kurt Deuschle

Mount Sinai School of Medicine

Zita Fearon

Consumer Commission on the Accreditation of

Health Services, Inc.

Rashi Fein

Center for Community Health and Medical Care

Harvard Medical School

Melvin A. Glasser

Committee for National Health Insurance

Patricia King

Georgetown Law Center

Joyce C. Lashof

Dean, School of Public Health

University of California, Berkeley

Mark Lepper

Vice President for Inter-Institutional Affairs

Rush-Presbyterian-St. Luke’s Medical Center
Appendix C—Glossary of Acronyms, Glossary of Terms, Acknowledgments, Health Program Advisory Committee Members ● 195

Margaret Mahoney

President, The Commonwealth Fund

Frederick Mosteller

Department of Health Policy and Management

Harvard School of Public Health

Beverlee Myers

Director, Department of Health Services

State of California

Mitchell Rabkin

General Director

Beth Israel Hospital

Frederick C. Robbins

President, Institute of Medicine

National Academy of Sciences

Rosemary Stevens

Department of History and Sociology of Science

University of Pennsylvania

Kerr White

Rockefeller Foundation
Appendix D.—OTA Public Outreach Survey

Introduction

Effective development and use of technologies for

disabled people require the extensive involvement of

disabled people themselves, as well as others who research, develop, produce, provide, and pay for the

technologies. In practice, however, such involvement

does not always occur. This finding became clear early

in the OTA study and was refined and confirmed

throughout the course of the project.

Similarly, it is generally recognized that the identification and analysis of problems and opportunities

related to Federal policies that affect the development

and use of technologies require input from those directly using, marketing, and providing the technologies—

the “public, ” This principle is particularly salient when

applied to areas related to disabled people. The need

for public input is primarily due to the great influence

of technology in nearly every aspect, from personal

to societal, of the lives of disabled people and those

around them. A complete understanding of issues

which shape and, in turn, are affected by policies can

occur only when personal experiences are examined.

Thus, from the beginning of this assessment, OTA

sought to involve the broad public interested in issues

relating to technology and disabled or handicapped

people. The objective was to reach beyond the world

of the experts on making policy affecting disabled persons to the world of experts on experiencing the effects of the policies. OTA hoped to learn more about

the real problems and opportunities which currently

exist and obtain suggestions for policy options to present to Congress.

Methods

After determining the objective of the public outreach effort, the next step was defining the “public”

to be reached, As established in the objective, the public did not include disabled or nondisabled public policymakers, practitioners, or academic experts on disability-related technology development and use. * It did

include disabled people not in those categories. However, as noted throughout the assessment, there is an

enormous variety of disabled individuals, with differing needs, desires, impairments, disabilities, handicaps,

abilities, attitudes, and resources. True representation,

therefore, was beyond the capabilities of the project.

“It N standard policy at OTA for these type of individuals to provide input to assessments by serving on the study advisory panel, by providing information for staff analysis, and by reviewing drafts of the report. This process is further described in app. A.

196

A feasible alternative for the outreach survey was determined to be contacting as many organizations dedicated to assisting different “types” of disabled people

as practical.

The remainder of the public consisted of people directly involved with some stage of technology development and use. As does the group of disabled individuals, this group includes individuals and organizations with a wide range of functions and a wide range

of attitudes and perspectives. It includes parents,

teachers, researchers, manufacturers, physicians, allied

health professionals, rehabilitation counselors, institutional providers, State agencies, third-party payers,

and many others. Again, true representation was beyond the capabilities of the project. However, OTA

hoped that by contacting professional associations, rehabilitation facilities, manufacturers of devices, and

insurance companies, input could be obtained from

many of the key perspectives of this sector of the

public.

The third step was developing a method to obtain

the public input. Although several forms of personal

contact were seriously considered (e.g., a national public forum or a series of public meetings across the country), a mail effort was selected because of time and financial constraints. First, a concise description of the

entire assessment was developed; this description is attached as addendum A to this appendix.

Next a survey method was selected. In order to

avoid limiting or steering responses to particular categories of problem statements or options for change,

OTA decided against the use of a questionnaire. Instead, a request for specific information on problems

and missed or potential opportunities was presented

in a general letter that stated the purpose of the assessment and of the outreach effort. This general letter,

attached as addendum B, was modified according to

the type of recipient.

The third step was compiling the actual list to which

the request letter and project description were to be

sent. Four categories were selected to encompass the

public as previously defined. The first and largest included “advocacy groups. ” OTA defined advocacy

groups broadly to include organizations devoted to the

various interests of different disabled people as well

as associations of and for parents, teachers, providers

(e.g., physicians and allied health professionals), program administrators and others who affect and are affected by the lives of disabled people. A list of 197

organizations and associations was compiled; the two

sources which provided the bulk of the list were the

1980-81 edition of Directory of Organizations Interested in the Handicapped (176) and the Directory
Appendix D—OTA Public Outreach Survey . 197

of National Information Sources on Handicapping

Conditions and Related Services (61).

The second category included medical rehabilitation

facilities. From the 1980 membership directory of

the National Association of Rehabilitation Facilities

(NARF) (155), the alphabetically first facility offering

medical rehabilitation services listed under each State

was selected. Not all States had such a facility. While

it was understood that the sample was not representative of all facilities in the country, * it was hoped that

geographic variation allowed a wider range of perspectives to be represented. The final list of 41 also included

several facilities that had heard about the assessment

and contacted OTA. The third category included companies that manufacture devices for disabled persons.

This list of 36 companies was not designed to be even

loosely representative of all product manufacturers.

Instead, it was compiled by using names of companies

participating in seminars and workshops attended by

OTA project staff members. Finally, the fourth category included 10 insurance companies whose benefits include coverage of some technologies for disabilities. The companies and people within them who were

contacted were suggested by a member of the Insurance Rehabilitation Study Group, a group of 50 insurance company executives who are actively engaged

in rehabilitation and medical administration.

The letters to the advocacy groups were mailed at

the beginning of April 1981, and the letters to the other

three groups were sent out in groups at weekly intervals. Recipients were requested to respond within 3

weeks so that their views could be fully considered.

However, although many of the responses arrived between 2 to 4 weeks later than the requested deadlines,

all responses were utilized in the preparation of the

draft and final reports.

*The membership of NARF is not necessarily representative of rehabil]tatlon [acil]t]es In the country. Furthermore, the code used in classifying the

services offered were likely to be used to mean different serwces by different

restitutions, OTA proceeded, however, as though “medica! rehabilitation”

meant the same services for each facility

Once received, the written responses and notes on

telephone responses were circulated among the staff.

A summary of issues, problems, and suggestions for

change was prepared for internal use; each staff

member received a copy. This summary was used in

drafting the body of the report and in the revision

process, Perhaps equally important, though, the summary was carefully reviewed as the findings and policy

options were developed. In a number of cases, the

respondents were contacted for followup information.

Response

Of 283 requests sent, 8 were returned unopened, and

61 responses were received. Table D-1 presents the

response rates by group. The overall and individual

response rates were surprisingly low, particularly for

the advocacy groups at 18.2 percent. Because issues

relating to disabled people have become increasingly

visible in part because of publicity developed by advoacy groups, OTA had anticipated a greater response.

As noted earlier, true representation of the “public”

was not an objective of the outreach effort, although

the low response rate diminished the amount of representation that would have been possible. An examination of the respondents produced no pattern in the

type of organization responding. A possible exception

to this was the multiplicity of responses from organizations concerned with visually impaired persons and

with hearing-impaired persons, although there are

more of these organizations than those with other concerns.

Despite the low response rate, the responses received

were generally quite helpful to OTA. Most appeared

to have been carefully considered. As a whole, the

responses served several important purposes. They

confirmed problems described in the literature relating

to all stages of the technology Iifecycle, including

research and development (R&D), evaluation, marketing and production, and delivery, use, and financing.

Perhaps more important, though, they provided speTable D-1 .—Response Rates of Public Outreach Survey

Percent responses

Number Number received of

Number returned responses requests reaching

Category sent unopened received destination

Advocacy group . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 196 4 35 18.2 0/0

Medical rehabilitation facilities . . . . , . . . . . . . . . . 41 1 11 27.5

Product companies . . . . . . . . . . . . . . . . . . . . . . . . . . 36 3 11 33.3

Insurance companies . . . . . . . . . . . . . . . . . . . . . . . . 10 0 4 40.0

Totals . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 283 8 61 21 .20/0

SOURCE Office of Technology Assessment
198 ● Technology and Handicapped People

cific examples of problems found in the process of technology development and use. Often, these examples

were of actual experiences at the local level. Furthermore, while there were no policy alternatives provided, there were several examples of changes that

might be made at various points in the technology

process. Several of these were used at appropriate

points in the report. Finally, the responses helped to

emphasize the importance of certain problems over

others because of the frequency with which they appeared. Owing to the lack of a representative sample,

the frequency of problems was used only as a rough

guide of their prominence.

An examination of the responses by category-advocacy groups, medical rehabilitation facilities, product companies, and insurance companies—revealed

more similarities than differences in the problems that

were stated most frequently and in the areas of the

technology lifecycle that were discussed. For example,

inadequate and inappropriate finding of technologies,

particularly devices, was the most frequent problem

cited in each group. And, in each group, with the exception of the insurance companies where there were

the fewest responses, there were problems cited with

research, evaluation, production, marketing, delivery

and use of technologies. Also, while most organizations discussed only device technologies, several respondents specifically utilized OTA’s broader definition of technology in their discussions.

As noted previously, the responses were used in all

stages of the preparation of the report. Presenting them

separately in great detail would involve unnecessary

repetition of the report. In addition, as noted above,

the responses differed little by category. Still, in order

to illustrate the results of the public outreach effort,

highlights of problem statements and suggestions

found in each category will be listed below. The order

is not significant.

Advocacy Groups

Support for programs employing disabled people or

enhancing their opportunities for employment is an

essential expenditure of funds and should not be decreased even in this era of budget cuts.

There is a lack of adequate and appropriate funding

for technologies for disabled people,

Information developed by researchers, which could

assist disabled people, does not reach them often or

systematically. It is essential that this gap be

eliminated.

There needs to be more input by disabled people in

research and services delivery in order that they may

●

●

●

●

●

●

●

determine the course of their own lives. In addition,

consumers of technologies, particularly devices,

need to be actively involved in evaluation and testing of new technologies.

There is a lack of coordination among public and

nonpublic programs, causing a waste of resources

to society and a lack of necessary services to some

individuals.

Policy makers need more and better data on disabilities and handicaps.

There is a lack of trained personnel to apply technologies to disabled people.

Research funding is often for complex devices, and

there is too little for necessary, but less complex,

ones.

Federal research funds are generally awarded to established researchers. Thus, the “basement” researcher with ideas developed from experience is

often unable to receive support.

The existence of different definitions of disability for

program eligibility impedes coordination of services

and may cause families to undergo multiple assessments.

Groups supporting people with particular disabilities

(e.g., visual impair-merits, hearing impairments, or

certain diseases) urged an appropriate focus on their

constituents.

Medical Rehabilitation Facilities

Although deinstitutionalization is a stated policy

under several programs, the services and funding

available often do not support it.

The research performed is not always appropriate;

there is a need for many more functional devices.

There is a need for uniform standards to assist in

client evaluation of products.

Programs that pay for technologies often do not

cover technologies that might cost more in the short

run but cost less in the long run. The total amount

of funding is inadequate.

The type of personnel licensed to prescribe technologies is not always appropriate. Further, there is a

shortage of all trained personnel.

Rehabilitation centers have particular difficulty in

obtaining funds for the R&D of new technologies.

There is a need for better organization of services

to assist disabled people.

There is a need for more centers to evaluate and

train clients in the use of devices.

Regulations governing institutional providers are

often unclear.
Appendix D—OTA Public Outreach Survey ● 199

Product Companies

• Too few large firms produce technologies for disabled people. The small firms that do are often

created out of the founder’s personal involvement

with disability. Small companies need relief from

regulation.

● There is a great need for data on the disabled population to assist in research as well as marketing.

● Information transfer between researchers and companies and between companies and users about devices is often a problem.

• Medical and social service personnel are often resistive to new technologies. In addition, there are

too few well-trained people to prescribe the technologies.

● Federal money goes into R&D but not beyond. The

risks of production of technologies for a small,

undefined market are often too great for the private

sector.

● It is difficult to move technologies from the R&D

stage to the market.

● There is a need for marketing/sales-oriented people to be involved in the peer review process of

awarding research grants.

● There is inadequate third-party funding of devices.

Insurance Companies

●

●

●

●

●

The availability of funding for technologies influences their availability to disabled individuals.

There is a lack of information on the availability

of specialized equipment.

There is a lack of general information on centers that

apply specialized equipment for disabled people.

It is essential that the needs and desires of disabled

individuals be balanced against the economic costs

and benefits of those needs and desires.

There is often a lack of adequate information for

users on the upkeep and available service for many

of the complex pieces of equipment funded by insurance companies.
200 ● Technology and Handicapped People

—.— .

Addendum A

Project On

——TECHNOLOGY AND HANDICAPPED PEOPLE

Office of Technology Assessment

Congress of the United States

At the request of the Senate Committee on Labor and Human Resources, the

Office of Technology Assessment (OTA) is conducting a comprehensive assessment

on ‘technology and Handicapped People.” One purpose of the project is t o

examine the policies and specific processe s through which technologies are

developed, evaluated, diffused, delivered, and used. Another purpose is to

examine the broader issues related to providing an appropriate fiscal and

technical fit between technologies and users.

Project Focus . Policies concerning technologies and handicapped peopl e

must tak e int o account a larg e number o f technologica l possibilities ,

organizationa l factors , resourc e allocatio n demands and complexities ,

individual and societal attitudes , and various (and often competing) levels o f

decisionmaking. OTA believes that a unifying framework for analysis is needed

in order to develop and evaluate policies that might fulfill the goal of an

appropriate match between the needs, desires, and capabilities of handicapped

people and the nation’s ability to develop and deliver the needed technology.

This concept of appropriate development and use of technology will guide the

study.

Appropriate technology implies an organized way of matching resources to

problems or opportunities . Appropriateness cannot be defined unless it s

context is specified, and that context will always involve social values as

well a s technical considerations . Thus, OTA i s tentativel y defining a

technology as appropriate when its development and use: 1) are in anticipatio n

of or reaction to handicap-related problems or opportunities, 2) are compatibl e

with resource constraints and occur in an efficient manner, and 3) result in a

favorable or acceptable ratio of desirable outcomes to negative effects an d

resource s consumed. In t h e above, problems, opportunities, resourc e

constraints, desirable outcomes, and acceptable ratios must be defined an d

valued by appropriate parties-at-interest .

Policies , processes, problems , and opportunities associated with element s

of the technology life cycle will be examined from the perspective outline d

above . In particular, OTA is developing or synthesizing specific informatio n

regarding : 1) researc h and development o f technologies , includin g

identification of needs and priority-setting ; 2) evaluation of the effects o f

technologies, including performance, efficacy, safety, economic and socia l

consequences; 3) diffusion and marketing of technologies, including incentive s

for private sector involvement; and 4) delivery and use of technologies,

including methods of payment or financing.

Definitions and Boundaries. It is necessary to decide on study boundaries

while remaining aware that many distinction s will be drawn artificially .

Throughout the study, decisions on scope and boundaries -- in effect, decision s

on whether to include or exclude specific types of handicaps, technologies, o r

policy issues -- will have to be dictated by pragmatism.
Appendix D—OTA Public Outreach Survey ● 201

Much work has been done by others on the definition of a “handicap” o r

“disability “ and on estimating the numbers of handicapped individuals in this

country . Despite this prior work , the situation is confused . By one estimate,

there are at least 41 definitions o f “disability” or “handicap” used by federa l

programs. Similarly, many estimates of the number of handicapped people suffer

from variou s deficiencie s such as lack of measures of severity ,

double–counting, or under-reporting . However, the OTA study is not intended to

identify populations to receive entitlements or other services. Therefore, i t

will not attempt to develop a preferred or recommended definition, nor will it

focus on the development of estimates of the numbers of handicapped people .

Instead, i t will cover the importance an d the implications for policy o f

methods by which the functional limitations of individuals are identified .

OTA defines technology broadly, as the application of an organized body of

knowledge to practical purposes. Under this definition, technologies includ e

physical objects, such as voice synthesizers, as well as processes, such a s

vocational rehabilitation or reimbursement systems. As a practical matter, th e

stud y will focus on those technologies designe d for and used directly b y

individuals (as opposed to populations) with the intent of eliminating ,

bypassing, or reducing one or more of the individuals’ functional limitations.

Thus, for example, medical devices, prostheses, modifications of automobiles,

and technique s or programs for vocational training are within the study’s

focus. Technologies designed to address and be applied to population-oriente d

needs, such as transportatio n systems or educational systems as a whole, ar e

generally considered outside of the study’s focus.

Other Elements of the Project . To support the core elements of th e

project , several additional activities are taking place . An analysis of th e

role o f t h e courts and t h e judiciar y in the implementation of federa l

legislation relating to handicaps is being conducted . This analysis will als o

cover the genera l issues o f rights and entitlements and the potential fo r

proposed legislativ e initiatives to effect change in the presen t situation .

OTA is also developing information about the attitudes (of society and of both

handicapped and able-bodied individuals) that affect processes and policie s

relating to the development and use of technology. This issue will be examined

in a workshop to be held in May 1981 . A third additional activity is th e

examination o f methods for developin g individualize d rehabilitation o r

educatio n “plans. ”

Several cas e studies will be conducted . Case studies are designed t o

provide both specific information about the technologies or areas of disabilit y

being studied as well as information that informs the more general issues being

examined. Ones in progress include : techniques for “mainstreaming” in earl y

childhood and elementary school; employment technologie s (techniques);

technologie s for severe speech impairments; the impact of federal legislatio n

on a state government; knee and hip implants; and learning disabilities. Ones

under consideratio n include : individuall y scheduled van servic e f o r

handicapped individuals; rocker shoes; incontinence; and toys.

The assessment began in October of 1980 and is scheduled for completion at

the end of 1981. It is being conducted by the Health Program of OTA. If Y O U

have any questions, or would like to contribute information or suggestions,

please call the Project Director, Clyde Behney, on (202) 226-2070, Or write to:

Office of Technology Assessment

U.S. Congress

Washington, D.C. 20510
202 . Technology and Handicapped People

Addendum B

March 27, 1981

2

Dear 2 :

As you may know, the Office of Technology Assessment is

conducting a comprehensive study on “Technology and the

Handicapped” for the Senate Committee on Labor and Human

Resources. A brief narrative description of the project is

attached .

The purpose of the assessment is to examine the specific

problems and opportunities found in the development,

evaluation , and use of technologies. Its purpose is also t o

examine the broader issues associated with providing an

appropriate match between the technology needs, desires, and

capabilities of users and the fiscal and technical ability t o

develop and deliver the technologies. The assessment will

present policy options for Congressional consideration .

These options may cover all aspects of the research,

development, evaluation, diffusion and marketing, delivery ,

and use of technologies.

While the responsibility for the project rests with OTA

staff , the advice of our advisory panel and numerous other

individuals and groups in the private and public sectors is

essential . We know that you and your organization have a

particular perspective that would be helpful to us in ou r

investigation of technology-related problems an d

opportunities. Could you review the attached description of

our project and suggest, from your perspective, specifi c

information on problems and missed or potential

opportunities ? We request and welcome your ideas. A s

mentioned, the final report of the OTA project will include a

series of policy options for the Congress. If you have

suggestions for needed actions, we would appreciate seeing

them.

We have purposely avoided the use of a questionnaire in

our request because we do not want to encourage or discourage

particular categories of problem statements or options.

Indeed, we hope that your response is constrained only by the

boundaries of your expertise in this area. Please do no t

restrict suggestions for solutions to those that requir e

legislative change or even to those involving the publi c

sector .
Appendix D—OTA Public Outreach Survey • 203

We ask that your res pons e be sent to us by Apri 1 2 2nd in

order to lessen the possibility of omitting key issues fro m

c o ns i d e r a t i on. Please send i t to me a t the fo 11 owi ng

address:

Health Program

Office of Technology Assessment

Congress of the United States

Washingto n$ D.C. 20510

We look forward to receiving your response and thank you

in advance for your time. If you have any questions, please

do not hesitate to call me or Anne Kesselman Burns at

(202) 226-2070.

Sincerely ,

Clyde J. Behney

Project Directo r

References

1.

2.

3.

4.

5.

6.

7.

8.

9.

10.

11.

12.

13.

14.

Abt Associates, Inc., “Cost-Benefit Analysis, ” in

The Program Services and Support System of the

Rehabilitation Services Administration: Final Report (Cambridge, Mass.: Abt Associates, Inc.,

1974) .

Allard, M. A., and Toff, G., Current and Future

Development of Intermediate Care Facilities for

the Mentally Retarded (Washington, D. C.: Intergovernmental Health Policy Project, George

Washington University, August 1980).

American Association of Fund Raising Counsel,

Inc., Giving U. S. A.: 1980 Annual Report (New

York: American Association of Fund Raising

Counsel, Inc., 1980).

Bagnato, S. J., “The Efficacy of Diagnostic Reports as Individualized Guides to Prescriptive

Goal Planning, “ Exceptional Child, 46:554, 1980.

Bailey, D. R., and Harbin, G. L., “Non-Discriminatory Evaluation, ” Exceptional Child. 46:590,

1980,

3ehney, C., “Health Policy and an Aging Population, ” paper presented to the Consumer Commission for the Accreditation of Health Services,

New York City, Nov. 18, 1978.

Berkeley Planning Associates, VR Program Evaluation Standards: Final Report (Berkeley, Calif.:

Berkeley Planning Associates, 1978).

Berkowitz, M., “Social Policy and the Disabled,”

paper presented at the Conference on the Implications for Social Security of Research on Invalidity, Vienna, Austria, Apr. 1-3, 1981.

Berkowitz, M., et al., An Evaluation of Policy -

Related Rehabilitation Research (New York:

Praeger, 1975).

Berman, C., Office of Special Education and

Rehabilitative Services, Department of Education, Washington, D. C., “A First Report of the

National Council on the Handicapped, ” unpublished paper, March 1981.

Bersoff, D. N., “The Psychological Evaluation of

Children: A Manual of Report Writing for Psychologists Who Work With Children in an Educational Setting, ” unpublished manuscript, 1973.

Better, S., et al., “Disability Benefits as Disincentives to Rehabilitation, ” Milbank Mere. Fun d

Q,/Health and Society 57(3):412, 1979.

Bisbee, G. E., Jr., et al., Musculo-Skeletal Disorders: Their Frequency of Occurrence and Their

impact on the Population of the United States

(New York: Prodist, 1978).

Blum, R., and Minkler, M., “Toward a Continuum of Caring Alternatives: Community

15

16.

17.

18.

19.

20.

21.

22.

23.

24.

25.

26.

27.

28.

Based Care For the Elderly, ” J. Social Issues

36(2):133, 1980.

Booz, Allen, & Hamilton, Inc., Management of

New Products, 4th ed. (New York: Booz, Allen,

& Hamilton, Inc., 1981).

Bowe, F., Handicapping America: Barrier-s to

Disabled People (New York: Harper & Row,

1978).

r Rehabilitating America: Toward Independence for Disabled and Elderly People (New

York: Harper & Row, 1980).

Bowe, F., et al., “Consumer involvement in

Rehabilitation, ” in Annual Review of Rehabilitation: Volume One, E. Pan, et al. (eds. (New

York: Springer Publishing Co., 1980).

Executive Summary of Coalition Building: A ‘Report on Feasibility Study To Develop

a National Model for Cross-Disability Communication and Cooperation (Washington, D. C.:

American Coalition of Citizens With Disabilities,

Jan. 30, 1978).

Brown, H. W., and Redden, M. R,, A Research

Agenda on Science and Technology for the Handicapped (Washington, D. C.: American Association for the Advancement of Science, 1979).

Bubany, C. D., “Legal Status of the Disabled” in

Human Rehabilitation Techniques, A Technology Assessment, Volume 111, Part A, Supplemental Reports: Contract Papers (Lubbock, Tex.:

Texas Tech University, 1977).

Bunker, J. P., Professor of Anesthesia and Family, Community, and Preventive Medicine, Stanford University, Stanford, Calif., personal communication, June 16, 1981.

Bunten-Mines, E., Planning Report; Measurement Standards for the Handicapped (Washington, D. C.: National Bureau of Standards, U.S.

Department of Commerce, November 1980).

Business Week, “A Miniaturized Typewriter,”

Sept. 25, 1978, p. 87.

Business Week-, “Technology’s New, Promise for

the Handicapped, ” Sept. 22, 1980, pp. 46 B-46p.

Butler, J., et al., Institute for Health Policy Studies, U. C. S. F., “Health Care Expenditures for Children With Chronic Disabilities, ” unpublished

paper, October 1981.

Cardus, D., et al., A Benefit-Cost Approach to

the Prioritization of Rehabilitation Research

(Houston: T, I. R. R., 1980).

, “Quality of Life in Benefit-Cost Analyses

of Rehabilitation Research, ” Arch, Phys. Med.

Rehab. 62:290, 1981.

207
208 ● Technology and Handicapped People

29. , Relationship Between the Survey of RSA

30.

31.

32

33

34

35.

36.

37.

38.

39,

40.

41.

42.

43.

44.

Program Benefits and the Management Information System (Houston: T. I. R. R., 1981),

Relationship Between the Survey of RSA

Program Benefits and the Management information System: Interim Report (Houston: T, I. R. R.,

March 1981).

Some Features of Benefit-Cost Modeling

for the’ RSA State-Federal Vocational Rehabilitation Program: Interim Report (Houston:

T. I. R. R., July 1981).

Cho, D, W., and Schuermann, A. C., “Economic

Costs and Benefits of Private Gainful Employment of the Severely Handicapped, ” J. Rehabilitation 46:28, 1980.

Ciutat, V., and Flick, G., “Examiner Differences

Among Stanford-Binet Items, ” Psych. Rpt.

21:613, 1967.

Clearfield, D., Medical Devices and Equipment

for the Disabled: An Examination (Washington,

D. C.: Disability Rights Center, Inc., 1976).

Cole, C. B., Comprehensive Management information System for the State/Federal Vocational

Rehabilitation Program (Cambridge, Mass.: Abt

Associates, Inc., 1980).

Conley, R. W., The Economics of Vocational

Rehabilitation (Baltimore: Johns Hopkins Press,

1975).

Coombs, F., Program Manager, Veterans Administration, Washington, D, C., “RER&D Program Analysis, ” internal memorandum, 1980.

Coop, R. H,, and Sigel, I. E., “Cognitive Style:

Implications for Learning and Instruction, ”

Psychol. Schools 8:152, 1971.

Copeland, W. C., and Iverson, I. A., HHH Institute of Public Affairs, University of Minnesota,

“Not Just the Aged, Not Just Health Care, and

Not Just Nursing Homes: Some Proposals for Policy and Legislative Changes in Long-Term Care, ”

unpublished paper, Jan, 14, 1981.

Roadmap Through Title XX (New York:

Child Welfare League of America, 1978).

Cowley, T. J., President, Phonic Ear, Inc., Mill

Valley, Calif,, personal communication, Aug. 7,

1981.

Crewe, N., and Athelstan, G. T., Functional Assessment Inventory (Minneapolis, Minn.: University of Minnesota, 1980).

Crewe, N., et al., “Vocational Diagnosis Through

Assessment of Functional Limitations, ” Arch.

Phys. Med. Rehabil. 56:513, 1975.

Curtis, W. S,, The Development and Application

of Intelligence Tests for the Blind: A Research Uti45.

46<

47.

48.

49,

50.

51.

52.

5 3

54%

55.

56.

57.

58.

59.

60.

lization Conference (Athens, Ga.: University of

Georgia, 1972).

DeJong, G,, “What’s Different About Functional

Assessment in Independent Living?” in Symposium on Functional Limitations, R. Turner (cd. )

(Cambridge, Mass.: Abt Associates, Inc., 1980).

DeJong, G., and Wenker, T., “Attendant Care

as a Prototype Independent Living Service, ”

Arch, Phys. Med. Rehabil. 60L:477, 1979.

DePape, J., and Krause, L. A., Trace Research

& Development Center, Madison Wis., “Guidelines for Seeking Funding for Communication

Aids, ” unpublished paper, 1980.

Department of Education, National Institute of

Education, The Vocational Education Study: The

Interim Report, September 1980.

Department of Education, Office of Special Education and Rehabilitative Services, Second Annual Report to Congress on the Implementation

of Public Law 94-142, The Education for All

Handicapped Children Act, 1980.

Department of Education, Office of Special Education and Rehabilitative Services, National Institute of Handicapped Research, Informer,

1980-81.

f Long-Range Plan, n.d.

“Long-Range Plan: Executive Summary, ”

November 1980.

Long-Range Plan, Technology for Handicapped Individuals: 1982-1985, vol. III, August

1980.

“REC Coverage of NIHR Long-Range

Plan Initiatives, ” 1980.

Research Directory of the Rehabilitation

Resear;h and Training Centers, Fiscal Year 1979,

December 1979).

Department of Education, Office of Special Education and Rehabilitative Services, Office for

Handicapped Individuals, Rehabilitation Engineering and Product Information, DE publication

No. E-80-22015, 1980.

, Selected Federal Publications Concerning the Handicapped, DE publication No.

80-22005, 1980.

Summary of Existing Legislation Relating to’ the Handicapped, publication No.

E-80-22014 (Washington, D. C.: U.S. Government Printing Office, August 1980).

Department of Education, Office of Special Education and Rehabilitative Services, Rehabilitation

Services Administration, American Rehabilitation, 1980-81.

Department of Health, Education, and Welfare,
References ● 209

61,

62.

63.

64,

65.

66.

67.

68.

69.

70!

71.

72,

Office of the Assistant Secretary for Planning and

Evaluation, Training and Employment Services

Policy Analysis: First Year Progress Report, September 1979.

Department of Health, Education, and Welfare,

Office of Human Development Services, Office

for Handicapped Individuals, Directory of National information Sources on Handicapping

Conditions and Related Services, DHEW publication No. (OHDS) 80-22007, May 1980.

, “Key Federal Regulations Affecting the

Handicapped, 1977-1978, ” HEW publication No.

(OHDS) 80-22008, November 1979.

“A Summary of Selected Legislation

Relating to the Handicapped, 1977-1978, ” publication No, (OHDS) 79-22003, May 1979.

Digest of Data on Persons with Disabilities, May 1979.

Department of Health, Education, and Welfare,

Office of Human Development Services, Rehabilitation Services Administration, and the Veterans Administration, Rehabilitation Engineering:

A Plan for Continued Progress (Charlottesville,

Va.: Rehabilitation Engineering Center, University of Virginia, 1978).

Department of Health and Human Services,

Health Care Financing Administration, L.ongTerm Care: Background and Future Directions,

HCFA publication No. 81-20047, January 1981.

Department of Health and Human Services,

Public Health Service, National Institutes of

Health, “Tailor-Made Verbalizer Machine Helps

Handicapped To Communicate Independently, ”

The NIH Record 33(11), 1981.

Department of Health and Human Services, Social Security Administration, “Social Security

Disability Amendments of 1980: Legislative History and Summary of Provisions, ” Soc. Sec. Bull.

44(4):14, 1981.

, “Table M-3—Selected Insurance and Related Programs: Beneficiaries of Cash Payments,

1940 -1980,” Soc. Sec. Bull. 44(2):32, 1981.

Department of Health and Human Services, Social Security Administration, Office of Policy,

Work Disability in the United States: A Chartbook, SSA publication No. 13-11978 (Washington, D. C.: U.S. Government Printing Office,

Dec. 1, 1980).

Diner, L., et al., Rehabilitation Indicators (New

York: Institute of Rehabilitation Medicine, 1979).

Rehabilitation Indicators Update (New

York: Institute of Rehabilitation Medicine, April

1979).

73.

74.

75

76.

77.

78.

79.

80.

81,

82.

83.

84

85

Dodson, R., and Collignon, F. C., Benefit-C’ost

Analysis of Vocational Rehabilitation Services

Provided to Individuals Most Severely Handicapped (Berkeley, Calif.: Berkeley Planning Associates, April 1975).

Dodson, R., et al., An Evaluation of the Costs

and Effectiveness of Vocational Rehabilitation

Service Strategies for Individuals Most Severely

Handicapped (Berkeley, Calif.: Berkeley Planning

Associates, May 1975).

Doucette, J., and Freedman, R., Progress Tests

for the Developmentally Disabled: An Evaluation

(Cambridge, Mass.: Abt Books, 1980).

Dudek, R. A., Human Rehabilitation Techniques: A Technology Assessment (Lubbock,

Tex.: Texas Tech University, 1977).

Education Advocates Coalition, Washington,

D. C., “Federal Compliance Activities To Implement the Education for All Handicapped Children

Act (Public Law 94-142 ),” unpublished report,

April 1980.

Electronic Industries Foundation, Washington,

D. C., “A Production and Marketing Strategy for

Prototype Devices Developed Under the Rehabilitation Engineering Program, ” submitted to the

Rehabilitation Services Administration, March

1978.

Ellis, D., “Methods of Assessment for Use With

the Visually and Mentally Handicapped: A Selective Review, ” Child: Care, Health and Development 4:397, 1978.

Englehardt, H. T., “John Hughlings Jackson and

the Mind Body Relationship, ” Bull. Hist. Med.

49:137, 1975.

Epilepsy Foundation of America, “Introduction

to the Basic Statistics on the Epilepsies, 1978”

(Washington, D. C.: Epilepsy Foundation of

America, 1978).

Erlanger, H. S., et al., Institute for Research on

Poverty, University of Wisconsin, Madison,

Wis,, “Disability Policy: The Parts and the

Whole,” unpublished paper, August 1979.

Fay, F., “Problems of the Severely and Multiply

Handicapped, ” in The White House Conference

on Handicapped Individuals, Volume One:

Awareness Papers (Washington, D. C.: U.S. Government Printing Office, May 1977).

Federal Register, “Education of Handicapped

Children: Implementation of Part B of the Education of the Handicapped Act, ” 47:42174, 1977.

, “State Vocational Rehabilitation and 1ndependent Living Rehabilitation Programs: Final

Regulations, ” 46:5522, 1981.
210 ● Technology and Handicapped People

86.

87.

88.

89,

90.

91.

92

93.

94.

95.

96

9 7

98,

“Vocational Rehabilitation Programs

and Projects: Evaluation Standards, ” 40:58956,

1975,

Feinstein, A, R., Clinical ]udgernent (Baltimore:

Williams & Wilkins, 1967).

Finkelstein, V., Attitudes and Disabled People

(New York: World Rehabilitation Fund, 1980).

Galloway, J. R., et al,, Issues in the Pupil Referral/Evaluation Process (Washington, D. C.: National Association of State Directors of Special

Education, 1980).

Gannon, R., Director of Speech Pathology and

Communications Assessment, Ontario Crippled

Children’s Center, Toronto, Ontario, personal

communication, Jan. 8, 1981.

Gannon, R., Director of Speech Pathology and

Communications Assessment, and McNaughton,

S.r Director, Bliss Symbolics Institute, Ontario

Crippled Children’s Center, Toronto, Ontario,

personal communication, Jan. 8, 1981.

General Accounting Office, U.S. Congress, Better Reevaluations of Handicapped Persons in

Sheltered Workshops Could Increase Their Opportunities for Competitive Employment, report

No. HRD-80-34 (Washington, D, C.: U.S. Government Printing Office, Mar. 11, 1980).

Disparities Still Exist in Who Gets Special Education, report No. IPE-81-I (Washington,

D. C.: U.S. Government Printing Office, 1981).

Medicare’s Reimbursement Policies for

Durabl; Medical Equipment Should Be Modified and Made More Consistent, report No.

HRD-81-140 (Washington, D. C.: U.S. Government Printing Office, 1981).

More Diligent Followup Needed To

Weed Out Ineligible SSA Disability Beneficiaries,

report No. HRD-81-48 (Washington, D. C.: U.S.

Government Printing Office, June 17, 1980).

Rehabilitating Blind and Disabled Supplemental Security Income Recipients: Federal

Role Needs Assessing, report No. HRD-79-5

(Washington, D. C.: U.S. Government Printing

Office, June 6, 1979).

, ‘The Rehabilitation Services Administration’s Research and Demonstration Grant Program and its Peer Review Relationship With the

National Academy of Sciences and the National

Institute of Handicapped Research Activities”

(Washington, D. C.: GAO, Human Resources Division, July 1979).

Stronger Federal Efforts Needed for Providing Employment Opportunities and Enforcing

Labor Standards in Sheltered Workshops, report

No. HRD-81-99 (Washington, D. C.: U.S. Government Printing Office, 1981).

99.

100,

101.

102

103.

104.

105.

106.

107.

108.

109.

110.

111.

112.

113.

114.

Unanswered Questions on Educating

Handicapped Children in Local Public Schools,

report No. HRD-81-43 (Washington, D. C.: U.S.

Government Printing Office, 1981).

Gillespie, P. H,, et al., “Legislative Definitions

of Learning Disabilities: Roadblock to Effective

Service,” J. Learning Disabilities 8:66o, 1975,

Gliedman, J,, and Roth, W., The Unexpected

Minority: Handicapped Children in America

(New York: Harcourt Brace Jovanovich, 1980),

Graduate Medical Education National Advisory

Committee, Health Resources Administration,

Public Health Service, Department of Health,

Education, and Welfare, Interim Report of the

Graduate Medical Education National Advisory

Committee, April 1979.

Gunby, P., “From ‘Regeneration’ to Prostheses:

Research on Spinal Cord Injury, ” J. A.M.A.

245(13):1293, 1981.

Hammerman, S., and Maikowski, S., The Economics of Disability: International Perspectives

(New York: Rehabilitation International, March

1981).

Havelock, R. G., Planning for Innovation

Through Dissemination and Utilization of

Knowledge (Ann Arbor, Mich.: Institute for

Social Research, University of Michigan, 1971).

Health Insurance Association of America, Compensation Systems Available to Disabled Persons

in the United States, 1979,

Health Insurance Institute, 2980-82 Source Book

of Health Insurance Data, 1981.

Hehir, H. J., Director, Provider and Medical Services Policy, Medicare Bureau, Baltimore, Md.,

personal communication to R. M. Smith, Everest & Jennings, Inc., Feb. 2, 1979.

Hobbs, N., The Futures of Children: Categories,

Labels and Their Consequences (Nashville,

Term.: Vanderbilt University, 1975).

Hobbs, N., et al., “Classifying Children: A Summary of the Final Report of the Project on Classification of Exceptional Children, ” Children Today 4(4):21, 1975.

Hoff, M. K., et al., “Notice and Consent: The

School’s Responsibility To Inform Parents, ” J.

School Psychol. 16:265, 1978.

Howard, R., Vocational Education of the Handicapped—State of the Art: An NASBE Report

(Washington, D, C.: National Association of

State Boards of Education, 1979).

Hull, K., The Rights of Physically Handicapped

People (New York: Avon Books, 1979).

Indices, Inc., Functional Limitations; A State of

the Art Review (Falls Church, Va.: Indices, Inc.,

n.d. ).
—

References . 211

115,

116.

117,

118.

119,

120.

121.

122.

123.

124.

125.

126,

127.

128.

129

130

Janssen, T. J., Reimbursement for Durable Medical Equipment: Volume I (Final Report) (Washington, D.C .: Health Care Financing Administration, U.S. Department of Health, Education, and

Welfare, March 1980).

Janssen, T. J., and Saffran, G., “Reimbursement

for Durable Medical Equipment, ” Health Care

Financing Review 2(3):85, 1981.

Juhr, G., et al., University Centers for International Rehabilitation, Michigan State University,

East Lansing, Mich., “Barriers to the Development and Application of Technological Aids for

Handicapped Persons, ” unpublished paper,

March 1979.

Kakalik, J. S., et al., Services for Handicapped

Youth: A Program Overview (Santa Monica,

Calif.: Rand Corp., May 1973).

Katz, I., et al., “Effects of Task Difficulty, Race

of Administrator and Instructions on Digit-Symbol Performance of Negroes, ” J. Personality &

Social Psychol. 2:53, 1965.

Keogh, B., “Psychological Evaluation of Exceptional Children: Old Hangups and New Directions, ” J. School Psychol. 10:141, 1972.

Kleinfelcl, S., The Hidden Minority (Boston: Little, Brown & Co., 1977).

Lansing, S., “Federal Support for the Handicapped Person, ” contract paper submitted to the

Office of Technology Assessment, U.S. Congress,

Washington, D. C., June 1981.

LaRocca, J., and Turem, J. S., The Application

of Technological Developments to Physically Disabled People (Washington, D. C.: The Urban Institute, May 1978).

Lasch, C., T-he Culture of Narcissism (New York:

W. W. Norton, 1978).

Lattin, D., “Doctors and Disabled People: Does

Father Always Know Best?” Disabled USA 4(2):1,

1980.

LeClair, R., National Institute of Handicapped

Research, Washington, D. C., “Science Information Exchange; Grants Awarded for FY 1979 for

Handicapped Research by Federal Agencies, ” personal communication, Mar. 9, 1981.

Library of Congress, Congressional Research

Service, “Cash and Non-Cash Benefits for Persons With Limited Income: Eligibility Rules, Recipient and Expenditure Data, FY 1977-79, ‘

report No. 81-44 EPW, Feb. 12, 1981.

“Education of the Handicapped, ” Issue

Brief No. IB78040, Feb. 25, 1981.

, “Social Security Disability Insurance:

Reagan Budget Assumes Savings, ” Mini Brief No.

MB81214, Mar. 23, 1981.

“Social Security’s Disability Programs:

131

132.

133.

134,

135.

136.

137.

138.

139.

140.

141.

142.

143.

144.

145.

146.

147.

Amendments of 1980, ” Issue Brief No. IB79084,

Feb. 25, 1981.

“Technology To Aid Disabled Persons, ”

paper prepared at request of the Committee on

Science and Technology, U.S. House of Representatives, Mar. 31, 1981.

, “Vocational Education Act: Reauthorization in 1981, ” Issue Brief No. IB81OO7, Mar. 18,

1981.

Lifchez, R., and Winslow, 13., Design for Independent Living: The Environment and Physically Disabled People (New York: Whitney Library

of Design, 1979).

Lucyk, J. R., Broadcasting and Social Policy

Branch, Department of Communications, Toronto, Ont., Canada, “Radio Reading Services for

the Blind and Otherwise Print-Handicapped, ” unpublished paper, March 1980.

McCann, J., “Continent Ileostomy Reported Effective in 95Y0 ,“ Medical Tribune, Sept. 24, 1980,

p. 13.

“Swedish Surgeon is Adapting Pouch for

Other Urinary Diversion Cases, ” Medical Tribune, Sept. 24, 1980, p. 13.

McCoy, S., and Glazzard, P., “Winning the Case

But Losing the Child: Interdisciplinary Experiences With P. L. 94-142, ” 1. Clin. Child Psych..

7(3):205, 1978.

McManus, L. A., “Evaluation of Disability Insurance Savings Due to Beneficiary Rehabilitation, ” Soc. Sec Bull. 44(2):19, 1981.

Medical World News, “For Those Who Can’t

Speak, ” 22(4):32, Feb. 16, 1981.

“Giving Autonomy to the Handicapped;” 22(5):32, Mar. 2, 1981.

Medsger, B., “The Most Captive Consumers, ”

The Progressive, March 1979, p. 34.

Mercer, J. R., Labeling the Mentally Retarded;

Clinical and Social Systems Perspectives on Mental Retardation (Berkeley, Calif.: University of

California Press, 1973).

Mittleman, M., “Insurance Rehabilitation Study

Group–What Is [t?”). Insurance Med. 11(4):26,

1980.

, “Rehabilitation Issues From an Insurer’s

Viewpoint: Pastr Present, Future, ” Arch. Phys.

Med. Rehabil. 61:587, 1980.

Morrell, J., et al., A Comprehensive Review and

Evaluation of lndividual Habilitation Plans;

Design Specifications (Falls Church, Va.: Rehabilitation Group, Inc., 1980).

Muller, L. S., “Receipt of Multiple Benefits by

Disabled-Worker Beneficiaries, ” Soc. Sec. Bull.

43(11):3, 1980.

Muthard r J. E., “Putting Rehabilitation Knowl-
212 ● Technology and Handicapped People

148.

149

150.

151.

152.

153.

154.

155.

156.

157,

158.

159.

160.

161.

162.

edge to Use, ” Rehabilitation Monograph No. 11

(Gainesville, Fla.: University of Florida, 1980).

Nagi, S. Z., “Definitions of Pathology, Impairment, Functional Limitations and Disability, ” in

Report of the First Mary E. Switzer Memorial

Seminar, E. G. Whitten (cd. ) (Washington, D. C.:

National Rehabilitation Association, 1975).

National Academy of Sciences, Health Care for

American Veterans, prepared for the Committee

on Veterans Affairs, U.S. House of Representatives, Committee Print No. 36 (Washington,

D. C.: U.S. Government Printing Office, 1977).

National Academy of Sciences, National

Research Council, Science and Technology in the

Service of the Physically Handicapped, vol. I,

(Springfield, Va.: National Technical Information

Service, December 1976).

Science and Technology in the Service

of the physically Handicapped, vol. II, 1976.

Assembly of Life Sciences, Final Report

of the Committee on Prosthetics Research in the

Veterans Administration, 1976.

National Aeronautics and Space Administration,

Technologies for the Handicapped and the Aged

(Washington, D. C.: NASA Technology Transfer

Division, 1979).

National Arthritis Advisory Board, National Institutes of Health, Public Health Service, Department of Health, Education, and Welfare, Policy

and Chronic Disease, NIH publication No.

79-1896, May 1979).

National Association of Rehabilitation Facilities,

1980 Membership Directory, July 1980.

National Commission on Social Security, Social

Security in America’s Future (Washington, D. C.:

U.S. Government Printing Office, March 1981).

National Science Foundation, Division of Problem-Focused Research Applications, “Program

Announcement; Science and Technology To Aid

the Handicapped, ” 1978.

Navickis, B., “Robaids for the Disabled, ” Stanford MD, fall 1980.

Nemeth, C., and Ellis, S., A Cost-Effectiveness

Analysis of Vocational Education Programs for

the Handicapped: Technical Report (Richmond:

Virginia State Department of Rehabilitation Services, June 1979).

New York Times, “New Library Device Reads to

the Blind, ” Mar. 16, 1978.

Noble, J. H., ‘The Limits of Cost-Benefit Analysis

as a Guide to Priority-Setting in Rehabilitation, ”

Eval. Q. 1(3), 1977.

Noble, J. H., “Peer Review: Quality Control of

Applied Social Research, ” Science 185(4155):916,

1974.

163.

164

165.

166.

167.

168.

169.

170<

171,

172,

173,

174

175,

Office of Management and Budget, Executive Office of the President, Special Analyses: Budget of

the United States Government, FY 1979, GPO

stock No. 041-001 -00157-3 (Washington, D. C.:

U.S. Government Printing Office, 1978.

Office of Technology Assessment, U.S. Congress,

Assessing the Efficacy and Safety of Medical

Technologies, GPO stock No. 052-003 -00593-0

(Washington, D. C.: U.S. Government Printing

Office, September 1978).

Development of Medical Technologies,

GPO stock No. 052-003 -00217-5 (Washington,

D. C.: U.S. Government Printing Office, August

1976) .

The Implications of Cost-Effectiveness

Analysis of Medical Technology, GPO stock No.

052-003 -00765-7 (Washington, D. C.: U.S. Government Printing Office, August 1980).

The Implications of Cost-Effectiveness

Analysis of Medical Technology/Background

Paper #3: The Efficacy and Cost-Effectiveness of

Psychotherapy, GPO stock No. 052-003-00783-5

(Washington, D. C.: U.S. Government Printing

Office, October 1980).

Strategies for Medical Technology

Assessment, in press, 1982.

Over, A. M., Jr., Williams College, Williamstown, Mass., personal communication, Dec. 9,

1980.

Over, A, M., Jr., et al., “A Model of the Demand

for Durable Medical Equipment, ” submitted to

the Health Care Financing Administration,

Department of Health, Education, and Welfare,

March 1980.

Ozer, M. N., “The Assessment/Evaluation Methodology in Use With Handicapped Persons, ” contract paper submitted to the Office of Technology

Assessment, U.S. Congress, Washington, D. C.,

June 1981.

“A Cybernetic Approach to Assessment:

A Problem Solving Planning System, ” in A

Cybernetic Approach to the Assessment of Children: Toward a More Humane Use of Human

Beings, M. N. Ozer (cd, ) (Boulder, Colo.:

Westview Press, 1979).

Solving Learning and Behavior Problems

of Children: A Planning System Integrating Assessment and Treatment (San Francisco: Jossey -

Bass Publishers, 1980).

Paine, R. S., et al,, “A Study of Minimal Cerebral

Dysfunction, ” Develop. Med. & Child Neurol,

10:505, 1968.

Parker, L., Kennedy Institute for Rehabilitation,

Baltimore, Md., personal communication, Dec. 1,

1980.
References ● 213

176.

177.

178.

179.

180.

181.

182.

183.

184.

185

186.

187.

188.

189.

190.

People-to-People Committee for the Handicapped, Directory of Organizations Interested in

the Handicapped, 1980-81 Edition (Washington,

D. C.: People-to-People Committee for the Handicapped, 1980).

Phonic Ear/Phonic Mirror, Echo On 2(4), Mill

Valley, Calif., 1980.

“Medicaid Funding for Electronic Communication Aids, ” June 1980.

Plourde, P. J., et al., Comprehensive Management Information System for the State/Federal

Vocational Rehabilitation Program: Final Systems Design (Cambridge, Mass.: Abt Associates,

Inc., July 1981).

President’s Committee on Employment of the

Handicapped, Disabled USA (published bimonthly until 1982; and quarterly thereafter).

National Health Care Policies for the

Handicapped: A Report to the President by the

National Health Care Policies for the Handicapped Working Group, fall 1978.

Price, M., and Goodman, L., “Individualized

Education Programs: A Cost Study, ” Exceptional

Child. 36:446, 1980.

Purtilo, R., Justice, Liberty, Compassion: Analysis of and Implications for “Humane” Health

Care and Rehabilitation in the United States:

Some Lessons From Sweden, Monograph No. 8

(New York: World Rehabilitation Fund, Inc.,

1981 ).

Queene, R., Administration on Developmental

Disabilities, Office of Human Development Services, Department of Health and Human Services,

Washington, D. C., personal communication,

Jan. 15, 1982.

Randal, J., “What’s New in Medicine, ” New York

Daily News, Sunday Magazine, May 4, 1980,

p. 48.

Reiss, J. B., Health Care Financing Administration, Washington, D. C., “Technology Assessment and Paying for Medical Services Provided

Patients, ” first draft, unpublished paper, Apr. 6,

1981.

Rehabilitation Engineering Center, Children’s

Hospital at Stanford, Team Assessment of Device

Effectiveness, 1980.

Research Triangle Institute, National Survey of

individualized Education Programs (IEPs) for

Handicapped Children, 1980.

Reynolds, M., “The Production Engineering

Process, ” Communication Outlook 2(4),

1980.

Ris, C., “Electronic Age Brings New Aids for the

Disabled, But Economics Put Them Out of Reach

of Many, ” Wall Street }ournal, p. 52, Aug. 26,

1980.

191.

192.

193.

194.

195.

196,

197,

198

199.

200.

201.

202.

203.

204.

205.

Rucker, C. N., ‘Technical Language in the School

Psychologist’s Report, ” Psycho/. Schools 4:145,

1967.

Ruggles, V., Associate Director of Patient and

Community Services, Muscular Dystrophy Association, New York City, “Funding of NonVocal Communication Aids: Curent Issues and

Strategies, ” unpublished paper, circa 1980 (date

unknown).

Schecter, M., Expert Consultant, Office of Information, National Institute on Aging, Bethesda,

Md., personal communication, Dec. 3, 1980.

Schipper, W., “Financial and Administrative

Considerations, ” J. School Health 50(5):228,

1980.

Seitzr V., et al., “Effects of Place of Testing on

the Peabody Picture Vocabulary Test Scores of

Disadvantaged Head Start and Non-Head-Start

Children, ” Child Develop, 46:481, 1975.

Sherwood, S., and Morris, J., Executive Sunrnary of a Study of the Effects of An Emergency

Response System for the Aged: A Final Report

(Hyattsville, Md.: National Center for Healtl~

Services Research Report, Department of Health,

Education, and Welfare, February 1980).

Sigelman, C., et. al., Human Rehabilitation Techniques, A Technology Assessment, vol. 2 (Washington, D. C.: National Science Foundation,

1977).

Slater, R., Medical Director, and Shala, B.,

Public Information Officer, The National Multiple Sclerosis Society, New York City, personal

communication, Jan. 18, 1981.

Sontag, S., Illness as Metaphor (New York: Farrar, Straus & Giroux, 1978).

Spiegel, A., and Podair, S. (eds. ), Rehabilitating

People With Disabilities into the Mainstream of

Society (Park Ridge, N. J.: Noyes Medical Publications, 1981).

Stedman, D., “Service Delivery Systems, ” in The

White House Conference on Handicapped lndividuals, Volume One : Awareness Papers

(Washington, D. C.: U.S. Government Printing

Office, 1977).

Stoneman, Z., and Gibson, S., “Situational Influences on Assessment Performance, ” Exceptional Child. 45:166, 1978.

Tallent, N., and Reiss, W. J., “The Trouble With

Psychological Reports, ” J. Clin. Psych. 15:444,

1959.

Thomas, S., et al., “Examiner Effect in IQ Testing

of Puerto Rican Working Class Children, ” Amer.

J. Orthopsych. 41:809, 1971.

Tobias, J., and Nevins, B., Center for Independent Living, Berkeley, Calif., “Rehabilitation Tech-
214 ● Technology and Handicapped People

206.

207.

208.

209.

210

211.

212.

213.

214.

215

216

nology: Delivery System and Its Gaps, ” unpublished paper, December 1980.

Toms, L., et al., “Examples of Independent Living Services: Their Components, and Their Users,

Working Paper” (Berkeley, Calif.: Berkeley Planning Associates, September 1979).

Tscos, P., and Bluestein, M., Lifeline Systems,

Inc., Watertown, Mass., personal communication, January 1981.

Urban Institute, Report of the Comprehensive

Service Needs Study, report submitted to the

Rehabilitation Services Administration, Office of

Human Development Services, U.S. Department

of Health, Education, and Welfare, Washington,

D. C., June 23, 1975.

U.S. House of Representatives, Committee on

Education and Labor, Subcommittee on Select

Education, Oversight Hearings on Public Law

94-142 (Washington, D. C.: U.S. Government

Printing Office, 1980).

U.S. House of Representatives, Committee on

Science and Technology, Report of the Panel on

Research Programs To Aid the Handicapped

(Washington, D. C.: U.S. Government Printing

Office, April 1977).

U.S. House of Representatives, Committee on

Science and Technology; and U.S. Senate, Committee on Labor and Human Resources, Application of Technology to Handicapped Individuals:

Process, Problems, and Progress (Washington,

D. C.: U.S. Government Printing Office, Mar. 16,

1981).

U.S. House of Representatives, Committee on

Ways and Means, Subcommittee on Social Security, Status of the Disability Insurance Program

(Washington, D. C.: U.S. Government Printing

Office, Mar. 16, 1981).

U.S. Senate, Committee on Finance, issues

Related to Social Security Act Disability Programs (Washington, D. C.: U.S. Government

Printing Office, 1979).

U.S. Senate, Committee on Labor and Human

Resources, Subcommittee on the Handicapped,

Rehabilitation, Comprehensive Services and Developmental Disabilities Legislation (Washington,

D. C.: U.S. Government Printing Office, August

1979).

U.S. Senate, Committee on Veterans’ Affairs,

Veterans’ Disability Compensation and Survivors’ Benefit Amendments of 1980, hearing June

17, 1980 (Washington, D. C.: U.S. Government

Printing office, 1980).

Utterback, J. M., “Innovation in Industry and the

Diffusion of Technology, ” Science 183:620, 1974.

217.

218.

219.

220.

221.

222.

223.

224.

225.

226.

227.

228.

229.

230.

231.

232.

Verville, R. E., “The Disabled, Rehabilitation and

Current Public Policy, “ in Rehabilitating People

With Disabilities Into the Mainstream of Society,

A. Spiegel and S. Posair (eds. ) (Park Ridge, N. J.:

Noyes Medical Publications, 1981).

Veterans Administration, Annual Reports on the

Exchange of Medical Information and Sharing

Medical Resources, FY 1979, prepared for the

Committee on Veterans Affairs, U.S. House of

Representatives, Committee Print No. 57

(Washington, D. C.: U.S. Government Printing

Office, 1980).

Department of Medicine and Surgery,

Prosthetic Sensory Aids Service, Bulletin of Prosthetics Research, (published quarterly).

Weintraub, P.r “Wired for Sound, ” Discover

1(3):50, 1980.

Wenchel, H. E., A Profile of the Medical Technology Industry and Government Policies (Washington, D. C.: Arthur Young & Co., 1981).

White, E., “P. L. 94-142’s Touchiest Topics:

Health Care, Discipline, Summer School, ” Amer.

Sch. Board J. 168:19, 1981.

Whitehead, C., Policy Analyst, Office of the Secretary, Department of Health and Human Services, Washington, D. C., “Employment and

Training of Handicapped Individuals, ” unpublished paper, Feb. 2, 1981.

personal communication, Jan. 18, 1981.

, personal communication, Jan. 26, 1981.

White House Conference on handicapped Individuals, Volume One: Awareness Papers (Washington, D. C.: U.S. Government Printing Office,

May 1977).

Whitten, R. P., “Technology Transfer: NASA’s

Bioengineering-Applications Program, ” Med.

Dev. & Diagn. Ind. Monthly, September 1980.

Williams, E., Nutritionist, Office of Technology

Assessment, U.S. Congress, Washington, D. C.,

personal communication, Jan. 25, 1981.

Wood, P., Impairment, Disability, Handicap:

Toward the Development of a Functional Information System (New York: World Rehabilitation

Fund, in press).

Yoshida, R., et al., “Group Decision Making in

the Planning Team Process: Myth or Reality?”

J. School Psych. 16:237, 1978.

Ysseldyke, J., “Who’s Calling the Plays in School

Psychology?” Psychol. Schools 15:373, 1978.

Zigler, E,, et al., “Motivational Factors in the Performance of Economically Disadvantaged Children on the Peabody Picture of Economically Disadvantaged Children on the Peabody Picture

Vocabulary Test, ” Child Develop. 44:294, 1973.