Assistive Devices for Severe Speech

Impairments

December 1983

NTIS order #PB84-175371
HEALTH TECHNOLOGY CASE STUDY 26:

Assistive Devices for

Severe Speech Impairments

DECEMBER 1983

This case study was performed as a part of OTA’s Assessment

Technology and Handicapped People

Prepared for OTA by:

Judith Randal, Congressional Fellow

Office of Technology Assessment, U.S. Congress

of

OTA Case Studies are documents containing information on a specific medical

technology or area of application that supplements formal OTA assessments. The

material is not normally of as immediate policy interest as that in an OTA Report,

nor does it present options for Congress to consider.

CONGRESS OF THE UNITED STATES

Office of Technology Assessment

Washington D C 20510
Library of Congress Catalog Card Number 83-600546

For sale by the Superintendent of Documents,

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

Assistive Devices for Severe Speech Impairments is Case Study 26 in OTA’s Health Technology Case Study Series. It is part of OTA’s

project on Technology and Hadicapped People,

requested by the Senate Committee on Labor and

Human Resources. A listing of other case studies

in the series is included at the end of this preface.

OTA case studies are designed to fulfill two

functions. The primary purpose is to provide

OTA with specific information that can be used

in forming general conclusions regarding broader

policy issues. The first 19 cases in the Health Technology Case Study Series, for example, were conducted in conjunction with OTA’s overall project

on The Implications of Cost-Effectiveness Analysis of Medical Technology. By examining the 19

cases as a group and looking for common problems or strengths in the techniques of cost-effectiveness or cost-benefit analysis, OTA was able

to better analyze the potential contribution that

those techniques might make to the management

of medical technology and health care costs and

quality.

The second function of the case studies is to

provide useful information on the specific technologies covered. The design and the funding levels of most of the case studies are such that they

should be read primarily in the context of the associated overall OTA projects. Nevertheless, in

many instances, the case studies do represent extensive reviews of the literature on the efficacy,

safety, and costs of the specific technologies and

as such can stand on their own as a useful contribution to the field.

Case studies are prepared in some instances because they have been specifically requested by

congressional committees and in others because

they have been selected through an extensive review process involving OTA staff and consultations with the congressional staffs, advisory panel

to the associated overall project, the Health Program Advisory Committee, and other experts in

various fields. Selection criteria were developed

to ensure that case studies provide the following:

●

●

●

●

●

●

●

●

examples of types of technologies by function (preventive, diagnostic, therapeutic, and

rehabilitative);

examples of types of technologies by physical

nature (drugs, devices, and procedures);

examples of technologies in different stages

of development and diffusion (new, emerging, and established);

examples from different areas of medicine

(e.g., general medical practice, pediatrics,

radiology, and surgery);

examples addressing medical problems that

are important because of their high frequency or significant impacts (e.g., cost);

examples of technologies with associated high

costs either because of high volume (for lowcost technologies) or high individual costs;

examples that could provide information material relating to the broader policy and methodological issues being examined in the particular overall project; and

examples with sufficient scientific literature.

Case studies are either prepared by OTA staff,

commissioned by OTA and performed under contract by experts (generally in academia), or written by OTA staff on the basis of contractors’

papers.

OTA subjects each case study to an extensive

review process. Initial drafts of cases are reviewed

by OTA staff and by members of the advisory

panel to the associated project. For commissioned

cases, comments are provided to authors, along

with OTA’s suggestions for revisions. Subsequent

drafts are sent by OTA to numerous experts for

review and comment. Each case is seen by at least

30 reviewers, and sometimes by 80 or more outside reviewers. These individuals may be from

relevant Government agencies, professional societies, consumer and public interest groups, medical practice, and academic medicine. Academicians such as economists, sociologists, decision

analysts, biologists, and so forth, as appropriate,

also review the cases.

Although cases are not statements of official

OTA position, the review process is designed to

. . .

111
satisfy OTA’s concern of each case study’s scien- fore, OTA encourages, and to the extent possitific quality and objectivity. During the various ble requires, authors to present balanced inforstages of the review and revision process, there- mation and recognize divergent points of view.

Health Technology Case Study Seriesa

Case Study Case Study

Series Case study title; author(s); Series Case study title; author(s);

number OTA publication numberb

number OTA publication numberb

—

1

2

3

4

5

6

7

8

9

10

11

12

13

Formal Analysis, Policy Formulation, and End-Stage

Renal Disease;

Richard A. Rettig (OTA-BP-H-9 (1))C

The Feasibility of Economic Evaluation of

Diagnostic Procedures: The Case of CT Scanning;

Judith L. Wagner (OTA-BP-H-9(2))

Screening for Colon Cancer: A Technology

Assessment;

David M. Eddy (OTA-BP-H-9(3))

Cost Effectiveness of Automated Multichannel

Chemistry Analyzers;

Milton C. Weinstein and Laurie A. Pearlman

(OTA-BP-H-9(4))

Periodontal Disease: Assessing the Effectiveness and

Costs of the Keyes Technique;

Richard M. Scheffler and Sheldon Rovin

(OTA-BP-H-9(5))

The Cost Effectiveness of Bone Marrow Transplant

Therapy and Its Policy Implications;

Stuart O. Schweitzer and C. C. Scalzi

(OTA-BP-H-9(6))

Allocating Costs and Benefits in Disease Prevention

Programs: An Application to Cervical Cancer

Screening;

Bryan R. Luce (Office of Technology Assessment)

(OTA-BP-H-9(7))

The Cost Effectiveness of Upper Gastrointestinal

Endoscopy;

Jonathan A. Showstack and Steven A. Schroeder

(OTA-BP-H-9(8))

The Artificial Heart: Cost, Risks, and Benefits;

Deborah P. Lubeck and John P. Bunker

(OTA-BP-H-9(9))

The Costs and Effectiveness of Neonatal Intensive

Care;

Peter Budetti, Peggy McManus, Nancy Barrand,

and Lu Ann Heinen (OTA-BP-H-9 (1 O))

Benefit and Cost Analysis of Medical Interventions:

The Case of Cimetidine and Peptic Ulcer Disease;

Harvey V. Fineberg and Laurie A. Peadman

(OTA-BP-H-9(11))

Assessing Selected Respiratory Therapy Modalities:

Trends and Relative Costs in the Washington, D.C.

Area;

Richard M. Scheffler and Morgan Delaney

(OTA-Bp-H-9( 12))

Cardiac Radionuclide Imaging and Cost

Effectiveness;

14

15

16

17

18

19

20

21

22

23

24

25

26

William B. Stason and Eric Fortess

(OTA-BP-H-9(13))

Cost Benefit/Cost Effectiveness of Medical

Technologies: A Case Study of Orthopedic Joint

Implants;

Judith D. Bentkover and Philip G. Drew

(OTA-BP-H-9(14))

Elective Hysterectomy: Costs, Risks, and Benefits;

Carol Korenbrot, Ann B. Flood, Michael Higgins,

Noralou Roos, and John P. Bunker

(OTA-BP-H-9(15))

The Costs and Effectiveness of Nurse Practitioners;

Lauren LeRoy and Sharon Solkowitz

(OTA-BP-H-9(16))

Surgery for Breast Cancer;

Karen Schachter Weingrod and Duncan Neuhauser

(OTA-BP-H-9(17))

The Efficacy and Cost Effectiveness of

Psychotherapy;

Leonard Saxe (Office of Technology Assessment)

(OTA-BP-H-9( 18))d

Assessment of Four Common X-Ray Procedures;

Judith L. Wagner (OTA-BP-H-9( 19))e

Mandatory Passive Restraint Systems in

Automobiles: Issues and Evidence;

Kenneth E. Warner (OTA-BP-H-15(20))f

Selected Telecommunications Devices for HearingImpaired Persons;

Virginia W. Stern and Martha Ross Redden

(OTA-BP-H-16(21)) g

The Effectiveness and Costs of Alcoholism

Treatment;

Leonard Saxe, Denise Dougherty, Katharine Esty,

and Michelle Fine (OTA-HCS-22)

The Safety, Efficacy, and Cost Effectiveness of

Therapeutic Apheresis;

John C. Langenbrunner (Office of Technology

Assessment) (OTA-HCS-23)

Variation in Length of Hospital Stay: Their

Relationship to Health Outcomes;

Mark R. Chassin (OTA-HCS-24)

Technology and Learning Disabilities;

Candis Cousins and Leonard Duhl (OTA-HCS-25)

Assistive Devices for Severe Speech Impairments;

Judith Randal (Office of Technology Assessment)

(OTA-HCS-26)

aAvailab]e for sale by the SUPrinten&nt of Documents, U.S. Government dgackground paper #J to The Implications of Cost-Effectiveness Analysis of

Printing Office, Washington, D. C., 20402, and by the National Technical Medical Technology.

Information Service, 5285 Port Royal Road, Springfield, Va., 22161. Call egackground papr #5 to The Implications of Cost-Effectiveness Analysis of

OTA’s Publishing Office (224-8996) for availability and ordering infor- Medical Technology.

mation. fBac&.ound paper #l to OTA’S May 1982 report Technology and Handiborigina] publication numbers appear in Parentheses. capped People.

cThe first 17 cases in the series were 17 separately issued cases in Background ggackground Paper #2 to Technology and Handicapped People.

Paper #2: Case Studies of Medical Technologies, prepared in conjunction

with OTA’s August 1980 report The Implications of Cost-Effectiveness Analvsis of Medical Technology.

iv
OTA Staff for Case Study #26

H. David Banta, Assistant Director, OTA

Health and Life Sciences Division *

Clyde J. Behney, Health Program Manager

Clyde J. Behney, Project Director

Anne Kesselman Burns, Analyst

Kerry Britten Kemp, Editor

Ann Covalt, Contractor

Virginia Cwalina, Administrative Assistant

Mary E. Harvey, Secretary

Jennifer Nelson, Secretary

OTA Publishing Staff

John C. Holmes, Publishing Officer

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

Glenda Lawing Linda A. Leahy Cheryl J. Manning

‘Until August 1983.
Advisory Panel on Technology and Handicapped People

Daisy Tagliacozzo, Panel Chair

Department of Sociology, University of Massachusetts, Harbor Campus

Miriam K. Bazelon Robert Leopold

Washington, D.C. Department of Psychiatry

Hospital of the University of Pennsylvania

Tom Beauchamp

Kennedy Institute—Center for Bioethics LeRoy Levitt

Georgetown University Mount Sinai Hospital

Monroe Berkowitz

Bureau of Economic Research

Rutgers University

Henrik Blum

University of California, Berkeley

Frank Bowe

Woodmere, N. Y.

Jim Gallagher

Martha Porter Graham Center

University of North Carolina, Chapel Hill

Melvin Glasser

Committee for National Health Insurance

A. Malachi Mixon, III

Invacare 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-Madison

Ralf Hotchkiss Michael Zullo

Oakland, Calif. Corporate Partnership Program

John Kimberly

U.S. Council for International Year of

The Wharton School

Disabled Persons

University of Pennsylvania

vi
Acknowledgments

Many people provided valuable assistance in the preparation of this case study. While OTA must assume

ultimate responsibility for its content, it greatly appreciates the contributions of—among many others—the following individuals:

David Beukelman

Director, Speech Pathology

University of Washington

Medical Center

Seattle, Wash.

Colette Coleman

Professor of Speech Pathology

California State University

Sacramento, Calif.

Yvonne Danjuma

Graduate Assistant

Office of Programs for Handicapped Students

Michigan State University

East Lansing, Mich.

Charles Diggs

Director, Speech-Language Pathology Liaison Branch

American Speech-Language-Hearing Association

Rockville, Md.

Allen T. Dittmann

Chief, Research Projects Section

Special Education Programs

U.S. Department of Education

Washington, D.C.

John Eulenberg

Associate Professor of Computer Science

Audiology and Speech Sciences and Linguistics

Artificial Language Laboratory

Computer Science Department

Michigan State University

East Lansing, Mich.

Alexandra Enders O.T.R.

Coordinator Information Dissemination

Rehabilitation Engineering Center

Children’s Hospital at Stanford

Palo Alto, Calif.

Cheri Florance

Department of Speech Therapy

St. Anthony’s Hospital

Columbus, Ohio

Richard Foulds

Director

Rehabilitation Engineering Center

Tufts University

Boston, Mass.

Carol Galaty

Director, CHAMPUS Liaison Office

Department of Defense

Washington, D.C.

Bruce Gans

Chairman, Department of Rehabilitation Medicine

New England Medical Center

Boston, Mass.

E. Paul Goldenberg

Waban, Mass.

Anna Hofmann

Market Researcher

Phonic Ear, Inc.

Mill Valley, Calif.

Mr. and Mrs. Richard Hoyt

Westfield, Mass.

Arlene Kraat

Speech and Hearing Center

Queens College

Flushing, N.Y.

Maurice LeBlanc

Director of Research

Rehabilitation Engineering Center

Children’s Hospital at Stanford

Palo Alto, Calif.

Christy Ludlow

Director

Division of Communication Disorders

National Institute of Neurological and Communicative

Disorders and Stroke

National Institutes of Health

Bethesda, Md.

Nola Marriner

Department of Speech and Hearing

University of Washington

Seattle, Wash.

Judith McDonald

Department of Speech and Hearing

University of Washington

Seattle, Wash.

Shirley McNaughton

Director

Blissymbolics Institute

Toronto, Canada

Laura F. Meyers

Speech Communication Research Laboratory

University of California

Los Angeles, Calif.

Judy Montgomery

Director, Non-Oral Communications for Fountain Valley

School District

Fountain Valley, Calif.

Rochelle Moss

Director

National ALS Foundation

New York, N.Y.

vii
Robert Munzer

Chief Neurological Devices Branch

Division of Anesthesiology and Neurology Devices

Food and Drug Administration

Rockville, Md.

Carol Nugent

Director, Speech and Language Pathology

Good Samaritan Hospital

Portland, Oreg.

Ralph Naunton

Director, Communicative Disorders Program

National Institute of Neurological and Communicative

Disorders and Stroke

National Institutes of Health

Bethesda, Md.

Gail Pickering

Speech Pathologist

Northridge Hospital Medical Center

Northridge, Calif.

Barry Romich

President

Prentke-Romich Co.

Shreve, Ohio

Lawrence Scadden

Arlington, Va.

Pamela Schiffmacher

Director, Speech Pathology

Northridge Hospital Medical Center

Northridge, Calif.

Howard S. Shane

Director, Communication Enhancement

The Children’s Hospital

Boston, Mass.

Robert J. Slater

Director, Medical and Community Services Department

National Multiple Sclerosis Society

New York, N.Y.

Barbara C. Sonies

Speech Pathologist

Clinical Center

National Institutes of Health

Bethesda, Md.

Leon S. Sternfeld

Medical Director

United Cerebral Palsy Association

New York, N.Y.

Christine Thompson

Trace Research and Development Center for

the Severely Communicatively Handicapped

University of Wisconsin

Madison, Wis.

Gregg C. Vanderheiden

Director, Trace Research and Development Center for

the Severely Communicatively Handicapped

University of Wisconsin

Madison, Wis.

Larry Weiss

President

Zygo Industries

Portland, Oreg.

.,. Vlll
Contents

CHAPTER 1: INTRODUCTION . . . . . . . . . . . . . . . . . . . . ., . . . . . . . . . . . . . . . . . . . . . . . .

Terminology. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Demography. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

CHAPTER 2: CASE STUDIES . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Ricky Hoyt’s Story . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

CHAPTER 3: ASSISTIVE COMMUNICATION SYSTEMS . . . . . . . . . . . . . . . . . . . . . . .

Classification of Assistive Communication Systems . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Psychological Issues . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Training and Research Issues Relevant to the Limitation of

Current Assistive Communication Aids . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

The Compatibility of System Components . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

CHAPTER 4: INFORMATION AND FUNDING FOR THE SPEECH-IMPAIRED. . . .

Information Resources . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Other Sources of Information.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Funding Issues . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Medicare . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Medicaid . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Civilian Health and Medical Program of the Uniformed Services (CHAMPUS) . . . .

Crippled Children’s Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Social Security Insurance and Social Security Disability Insurance . . . . . . . . . . . . . . .

Public Law 94-142–Education for All Handicapped Children Act of 1975..... . . .

Vocational Rehabilitation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Veterans Administration. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Private Health Insurance Sources . . . ., , . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Private Disability Insurance . . . . . . . . . . . . . . . . . . . . . . . . . . . , . . . . . . . . . . . . . . . . . . . . .

Workers’ Compensation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Unions and Employers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Service Clubs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Voluntary Health Agencies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Discussion of Funding Issues. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

The Industry Perspective . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

REFERENCES . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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OTA Note

These case studies are authored works commissioned by OTA. Each author

is responsible for the conclusions of specific case studies. These cases are not statements of official OTA position. OTA does not make recommendations or endorse

particular technologies. During the various stages of review and revision, therefore,

OTA encouraged the authors to present balanced information and to recognize

divergent points of view. Since the research and writing of this case study in 1981

and 1982, there have been significant technological changes that may not be adequately represented in this study.
1.

Introduction
1.

Introduction; —

Lack of speech is a serious disability. When

combined with other disabilities that render a person functionally unable to write or type, it is more

serious still. Whatever their age and whether or

not they are of normal intelligence, people with

such disabilities are very likely to be placed in institutional care. And if they are people who—because of a genetic defect, an accident during gestation or an injury at birth—have never talked,

chances are they will be assumed to be profoundly

mentally retarded and so will also have been deprived of that education without which no one

in this society can aspire to enter the work force

or to live as an independent adult.

Children whose speech is limited or are mute

because of congenital deafness, but who can use

their arms and hands, have long had the opportunity to learn sign language, usually learn to

read, write, and spell with some proficiency, and

often learn to speak as well. By contrast, children

with the kinds of central nervous system damage

that preclude both the development of speech and

the development of hand and finger motor skills

have traditionally not been taught a systematic

means—oral, written, or gestural —to communicate either with each other or with the outside

world.

People of all levels of intelligence are found in

the population with the inability to speak which

is one of several neurological or neuromuscular

impairments. But, only rarely have distinctions

been drawn between those incapable of thinking

of comprehending and those who simply cannot

TERMINOLOGY

The nonspeaking population is referred to by

a variety of terms, including severely speechimpaired, speechless, nonoral, nonverbal, and

others. The reason for the multiplicity of terms

is that some of the individuals in question can actually produce sounds or a limited amount of

speech, but nonetheless qualify as nonspeaking

express themselves. Lack of speech has been confused with lack of language and often been automatically equated with lack of intelligence.

As recently as the mid-1970’s, there was little

or no remedy for either the congenital or the acquired inability to speak when accompanied by

severe physical disability. Affected individuals

could often communicate with those in their immediate circles by resorting to eye signals, other

forms of private language, or the use of primitive

language boards. But the emotional and intellectual content of such interactions was limited, consigning these people to social isolation, passivity, and custodial care.

This case study is about the revolution in communication aids that has since changed the outlook for this population, its accomplishments to

date, its promise for the future, and its problems.

It is also about related public policy and the barriers to fully utilizing the technology now available for the benefit of the individuals in question,

their friends and families, and society as a whole.

As no ability is more highly valued in complex

modern societies than the ability to exchange and

process information, this study deals with a disability that is like no other. But, insofar as people with many handicapping conditions are faced

with a poor fit between their potential and the

means available to them to fulfill it, this case study

is applicable to virtually the entire disabled community.

because what they say is unintelligible, inaudible,

or both.

A position paper developed by an ad hoc committee of the American Speech-Language-Hearing

Association in January 1980 and revised in 1981

defined a nonspeaking person as one for whom

3
4 ● Health Technology Case Study 26: Assistive Devices for Severe Speech Impairments

“speech is temporarily or permanently inadequate

to meet all of his or her communications needs

and whose inability to speak is not due primarily to a hearing impairment” (35). With the proviso that stuttering and the lack of speech associated with autism will be excluded from consideration—because these disorders are not seriously

physically disabling—that definition is the one

that will be used here.

The case study will also touch very little on

aphasia, language disorder following brain injury,

DEMOGRAPHY

No precise count is available of nonspeaking

persons in the United States who meet the above

description. Nor has any census been taken of

how many nonspeaking persons owe their difficulties only to developmental problems—inherent

difficulty in reading or producing meaningful

speech, despite intelligence in the normal range—

and how many are also mentally retarded, or

mentally retarded alone. It can be said, however,

that: 1) more males than females are found in the

nonspeaking population, and 2) statistical inferences point to there being at least 750,000 to 1.5

million severely disabled nonspeaking children

and adults in this country. Included in this estimate are approximately 90,000 people with congenital impairments (primarily but not entirely a

consequence of cerebral palsy); 500,000 with acquired disabilities resulting from severe illness or

fever, head trauma, or stroke; and 140,000 persons who have progressive disorders of the central nervous system such as amyotrophic lateral

sclerosis (abbreviated as ALS, and known as

motor neuron disease in Britain and popularly as

Lou Gehrig disease in the United States), multiple sclerosis, dystonia musculorum deformans,

some forms of muscular dystrophy, Parkinson’s

disease, myasthenia gravis, Huntington’s chorea,

Friedreich’s ataxia, and ataxia telangiectasia (9).

It is difficult to estimate the incidence and prevalence of severe speech impairment, because this

functional disability affects some, but not all, people in given diagnostic categories, and the numand the anemia that often accompanies it, which

are less the inability to speak than the inability

to find the right words to articulate an idea. While

this last qualification excludes from consideration

many people who have had cerebrovascular accidents (strokes), it does not exclude those-many

of them children—who have had the kind of

stroke that injures the brain stem and does not

result in aphasia.

bers of people counted in those categories are

often themselves only estimates.

For example, speech loss is frequently an early

sign of the bulbar form of ALS and occurs, as

well, in other forms of this lethal disease. But the

National ALS Foundation does not know how

many people there are in the United States with

ALS, nor how many of them are unable to talk

(30).

Similarly, the United Cerebral Palsy (CP) Association can only make an educated guess that

there are 750,000 individuals with CP in the

United States, that 85 to 90 percent of them are

speech-impaired, and of that 85 to 90 percent,

about 30 percent are without any useful speech

(46). The incidence of CP is estimated to be 25

per 10,000 live births. This means that, of those

25, approximately 7 will probably never be able

to talk.

Much the same is true of those with chronic degenerative nervous system disorders. Parkinson’s

disease (popularly known as shaking palsy) is a

case in point. First surgical intervention and then

the development of specific drug therapy during

the 1960’s have at least temporarily spared many

patients the severe motor symptoms of Parkinson’s. But neither mode of treatment has achieved

much, if any, improvement in the speech deterioration of these patients. Although no rigorous

data are available as proof, the clinical impression of some observers is that, in some cases, the
Ch. I—Introduction ● 5

gain in life expectancy and control of tremors may

have been at the expense of accelerating speech

deterioration (21).

More than 2,000 Americans each year develop

Guillain-Barré Syndrome (popularly known as

French polio), which became familiar to the public

as a complication of the swine flu vaccine, but

can also occur under other circumstances (49).

About 75 percent of those with this disease experience loss of speech. Though the loss is usually

temporary, it is frightening nonetheless, especially

because recovery from this disease is often slow

(16).

Current surgery for cancer of the head and neck

often includes removal of the larynx, and less frequently, removal of the entire tongue and soft palate. All three procedures obviate the possibility

of unaided speech. Again, no precise estimate of

the number of persons affected is available.

The absence of reliable data on the size of the

physically disabled nonspeaking population and

the reasons for their disabilities is a contributing

factor to the often inadequate rehabilitation and

needlessly high cost of caring for this population.
2.

Case Studies
2

Case Studies

Speech is so much second nature to most people

that they cannot imagine what it would be like

to be without it. The following vignettes suggest

the anger, frustration, helplessness, and despair

of not being able to express one’s thoughts and

feelings by any reliable means for years on end.

They are included because they describe actual

people whose lives have been changed by assistive

communication technologies. OTA thanks Ms.

Carol Nugent, Director of Speech and Language

Pathology at the Good Samaritan Hospital in

Portland, Oreg., for telling us most of these

stories. With the exception of Ricky Hoyt, whose

real name is used (with permission), all names and

some identifying details have been changed to protect the privacy of those involved.

Joey Crandall’s mother was watching TV one

afternoon last spring in Portland, Oreg., when a

short feature came on about the speech language

pathology department at the Rehabilitation Institute of the Good Samaritan Hospital there. That

one feature is why this l&year-old, whose normal language development began and ended while

he was still a toddler, is learning to communicate

with others for the first time since he was old

enough to go to school.

Joey has been unable to communicate because

the carotids, the two major arteries that furnish

blood to the head and brain, did not form properly before his birth. Because of their weakness,

he was only 3 when he had a cerebrovascular accident, what is commonly called a stroke. He now

walks, although he must drag one leg through

with every step. He has occasional seizures, and

the best he has been able to do in the way of talking is to make noisy cries. Despite the boy’s having had 7 years of conventional speech therapy,

even those in his family do not always know what

his cries mean.

Upon Joey’s arrival at Good Samaritan, one of

the first objectives of the assessment team was to

determine what parts of his body the child might

use to link him to a system that would serve him

in the place of speech. His left hand was nearly

useless, so that was out. He could not hold a pencil with his right hand, even with finger splints,

but the rehabilitation staff became persuaded that

he could gain sufficient control of it to be able

to turn a switch or buttons on and off. The result

is that Joey now has a HandiVoice 110, a portable

synthetic voice communication aid with a touchsensitive keyboard.

Paid for by a local organization, the Scottish

Rite Institute of Childhood Aphasia in Portland,

Oreg. (1 of 25 such institutes in the United States),

this device was selected for Joey because he has

so long been isolated in his own private world that

he needs the feedback he gets from hearing the

machine respond out loud to his touching it to

encourage him to emerge from his shell. Within

a week or so of getting the aid he was already programing it to say things like “I want a cookie” and

“Where is Mom?”

Taking the initiative is, indeed, a lot of what

Joey is discovering having the HandiVoice is all

about. Tommy, his 6-year-old brother, and Lisa,

his 8-year-old sister, had grown accustomed to

talking for Joey. With the help of the Scottish Rite

Institute, they all attend therapy together so that

the younger children will come to understand

that, though they may explain or amplify when

necessary, it is Joey who should be in charge of

what he wants to say.

Joey had been in public school, but enjoying

only what his speech therapist termed “a haphazard experience. ” Because he had never been able

to actively participate in class, he had never really

learned to read, write, spell, or do arithmetic.

At the private school where he was enrolled

after getting his HandiVoice, Joey has the benefit

of a teacher familiar with nonvocal youngsters

who is willing to coordinate her program for

speaking pupils with special teaching strategies for

him. Though no one yet knows how much lost

time he can makeup for (the intelligence of people

in Joey’s situation is hard to test), the plan is to

help him progress as rapidly as his communication system allows.

9
10 ● Health Technology Case Study 26: Assistive Devices for Severe Speech Impairments

Bryan Wilson is another client of Good Samaritan. Bryan was delivering newspapers after

school when he was struck by a hit-and-run driver

who was later apprehended by the police and convicted. He was then just about to celebrate his

15th birthday, and, as this was written, has recently turned 18.

Bryan now needs a cane to walk, which he can

do only with difficulty. The brain damage from

the accident was such that his hand and finger

functions are limited and he has yet to regain his

speech. Nonetheless, Bryan was able to graduate

with his high school class in June 1981, and, after

spending the summer helping his 17-year-old

brother, Sam, to paint houses (Sam would position him on the floor so he could do the trim),

he entered Portland State University that fall.

Little of this would probably have been possible had Bryan been injured in 1968 instead of

1978. Bryan uses a small, portable, battery-powered tape typewriter called a Canon Communicator, which he wears suspended from his belt

buckle, for informal face-to-face conversations

and a second machine, called a Portatel, with a

lighted display for work in class. (Bryan is fortunate that the funding of these devices was not a

problem—he qualified for worker’s compensation

and was also covered by the liability insurance

of the driver who injured him. )

At Good Samaritan’s Rehabilitation Institute

assistive communication is arranged not only for

the young. Although the Rehabilitation Institute

counts among its clients people like 16-year-old

Sue Jones, whose loss of muscular control and

speech 2 years ago resulted from a high fever during a bout of toxic shock syndrome, and 25-yearold Jack Brown, who was left paraplegic and severely speech-impaired by a motorcycle accident,

Good Samaritan also has older speech-impaired

clients.

One, Earl Higginson, now in his forties, had

two strokes within 5 months—the first on the left

side of his brain, the second on the right side—

about 8 years ago. Complications developed after

his second stroke that threatened to drown him

in his own saliva, and surgeons were forced to

tie off his vocal cords to prevent fluid from flooding his lungs. While this procedure is usually reversible, the damage to the cords was permanent

by the time Higginson was sufficiently recovered

to undergo the restorative surgery. After long

months of convalescence, it was clear that he was

as alert and intellectually competent as ever, but

that his prospects of being able to talk again were

extremely poor.

Higginson cannot use his left arm, has some

residual difficulties in walking, and lost his position as an accountant soon after he became ill.

Yet he is not an invalid and now rides the public

bus alone to and from a new full-time job that,

although not as demanding as his old one, gives

him the satisfaction of again being able to support his wife and daughters and entails the considerable responsibilities of handling payroll and

inventory for his employer. He has been able to

assume these responsibilities by learning to use

a Canon Communicator for written communication and a HandiVoice 110 for telephoning. Both

devices were bought for him with vocational rehabilitation funds.

Rosalie Hathaway’s case is sadder, but is included here because it represents many others.

Until 1974 when she had a massive stroke, Mrs.

Hathaway lived in the San Francisco Bay area

with her husband and two daughters, who were

then in the third and fifth grades. Since that time

she has been confined to a nursing home in a small

eastern Oregon town. She was taken there to

be near her mother, and because her husband

thought it best for the children not to visit her.

If his decision seems callous, it should be said

that, since her brain hemorrhage, Mrs. Hathaway,

who was 41, when this was written, is completely paralyzed below her neck and above it has constant tremors. In addition, her vision is poor, and

she has severe difficulties in swallowing. Her

meals must be pureed and spoon-fed to her and,

nonetheless, take her 40 minutes to consume. Even

that is a triumph. Before an arduous swallowing

retraining program, she had to be fed by stomach

tube.

Mrs. Hathaway, however, is by no means completely debilitated. Though the only sounds she

can make are squawks, her mental faculties are

intact, and she can still read and spell. Apart from
Ch. 2–Case Studies ● 11

a large screen television that she can watch both

from her bed and a wheelchair, her greatest material joy is a portable device called a Zygo 100.

It has an electronic memory that allows her to

compose whatever she wants to say, a message

display large enough for her to see, and a buzzer

so that she can summon attention when she is

ready to have the text read.

How does a woman who cannot so much as

feed herself operate a machine? That was not an

easy problem for the rehabilitation team at Good

Samaritan to solve. They found that there was

only one muscle, in her chin, over which she had

some control. Using this muscle to control the

Zygo’s switches, Mrs. Hathaway is able to guide

the device’s indicator to the items she selects on

the electronic communications board, and has

made truly remarkable progress. Whereas it took

RICKY HOYT’S STORY

When their first child was born in 1962, it

wasn’t obvious to the Hoyts that anything was

wrong. But Ricky didn’t develop as most babies

do, and within a year the Hoyts—who live in

Westfield, Mass.—were to learn of a disorder they

had never heard of. Pediatricians told them that

Ricky had a very serious case of cerebral palsy.

He would never walk or be able to feed himself

and was mentally retarded. “Put him in an institution, ” the pediatricians advised the Hoyts, “he will

always be a vegetable. ”

Two decades later, it is true, as predicted, that

Ricky cannot walk or feed himself. The Hoyts felt

intuitively, however, that their son was bright.

So when their minister told them they had a choice

between really going to bat for him or feeling

sorry for themselves forever, they decided to seek

out the best professional help available.

Because the Hoyts live in Massachusetts, they

took the child to the cerebral palsy unit at Children’s Hospital in Boston soon after they were told

of his prognosis. There, he was seen periodically

by a team of rehabilitation experts, and Judy

Hoyt, his mother, was instructed in how to provide the little boy with daily therapy sessions at

home.

her about 20 minutes to compose a sentence a year

ago, it now takes her about 3, and she is still gaining speed as ways are found to better adapt the

system to her needs.

Mrs. Hathaway’s ability to express herself again

has reduced the time her nurses must spend in caring for her by about a third. She can now alert

them to impending bladder infections, threatened

bedsores, and other problems before they become

acute.

But most of all, her communication system has

enabled her to share everything from her fantasies

and her reactions to what she sees on television

to what she wants to have her mother tell her

daughters when she writes to them on her behalf.

Hathaway is the first to say that this system has

enhanced the quality of her life.

“In those days, ” she recalls, “a technique called

‘brushing and icing’ was part of the standard treatment for cerebral palsy kids like Ricky, ” who, in

addition to their other problems, were seriously

speech-impaired. The idea was that cracked ice

regularly applied to their mouths and throats with

a toothbrush would reduce the flaccidity of the

speech-producing muscles and eventually enable

these children to talk.

“Ricky and I did all his physical therapy sessions together and enjoyed most of them, but both

of us hated this, ” she recalls. “Besides, it became

very evident that we weren’t getting anywhere.

Ricky was 7 or 8 when the speech therapist at

Children’s finally had the guts to say ‘Hey, this

child is really never going to speak and we need

to be looking for other ways for him to communicate. ’ To hear him say it, at last, came as a

relief. ”

Meanwhile, Ricky had long since begun to do

such things as look at the refrigerator when he

was hungry or thirsty, or at the window when

he wanted to go out. So Judy, more confident

than ever that the child was not stupid, had already begun her own program to give Ricky a

foundation for language skills.
12 ● Health Technology Case Study 26: Assistive Devices for Severe Speech Impairments

A psychologist at Children’s Hospital in Boston

had suggested to her that, since Ricky couldn’t

even crawl, she bring the material world to him

by rubbing his body with a variety of objects—

some hard, some soft, some smooth, some rough

—so that he could explore these sensory realities

for himself. Eventually, she hit on cutting letters

out of sandpaper to enable him to learn the alphabet and begin to learn to spell. As it happened,

the psychologist was a wheelchair user. This further convinced the Hoyts that handicapped people could succeed. And it was a bonus that they

drew the courage from their counseling sessions

with him to have another baby. Their second son

Robby, was born to the couple when Ricky was

2 and a third son, Russell, when Ricky was 6.

But, the arrival of Russell is getting ahead of

the story. It is characteristic of Judy that, when

Ricky was 4, she arranged to enroll him in a

church-sponsored nursery school and kindergarten in exchange for her caring for the teachers’

children and the children of several women who

agreed to fulfill his special needs of toileting,

feeding, and play during the hours he was away

from home.

Judy also taught her disabled son to swim (and

has since taught other disabled youngsters to swim

as well). The head control Ricky gained in the

process is probably largely responsible for his being able to operate both the switches that control his electric wheelchair and those for what the

Hoyts call “the hope machine.”

The “hope machine” is more formally known

as the Tufts Interactive Communicator—the TIC

for short. This machine, developed at Tufts University, uses a lighted letter display board and

paper strip printer to enable nonvocal people,

otherwise incapable of writing, to communicate.

Had it not been for Ricky, this device might not

exist.

In addition to being seen by therapists at the

Children’s Hospital in Boston, Ricky was also regularly seen by an occupational therapist at a cerebral palsy clinic closer to his home. One day, Judy

went to a conference there, where she met Richard

Foulds, then a graduate student in rehabilitation

engineering at Tufts. Foulds has been toying with

building a communication system for severely

physically handicapped nonvocal people, and

once the occupational therapist introduced him

to Ricky, he agreed to try to make the concept

a reality.

First, however, there was a major obstacle to

overcome. The parts to build prototypes and a

production model would cost about $5,000, and

at that point neither Foulds nor his university had

the funds. Through a dinner dance their church

sponsored and a series of bake sales, yard sales,

and other activities, the Hoyts and their neighbors

raised the money. Foulds began to design the machine in earnest when Ricky was 8. When Ricky

was 10, the first TIC ever made for practical use

became his for keeps.

The Hoyts were, of course, elated. Only one

hurdle remained: except for a special education

program described by Judy as “not very systematic, ” they had never been able to get Ricky into

public school. They had succeeded in pressuring

the authorities to move the special education program from space in an old age hospital into the

back room of an actual school. But every time

they attempted to have Ricky go to classes with

able-bodied youngsters of normal intelligence,

school officials adamantly refused.

Still undaunted, the Hoyts resorted to a kind

of “back door” approach. They hired tutors,

among them some youngsters who were proficient

at science and arithmetic. These children came to

like Ricky and to realize that he was as capable

of learning as they were. “He doesn’t need to be

in a special class, ” they told their teachers. And

so even before Ricky was 12—when the law in

Massachusetts changed to make “mainstreaming”

his right and he was admitted to fifth grade—he

was allowed to attend regular classes in science

and arithmetic. With the change in the law and

Ricky’s TIC, the schools could also no longer believe that his parents might be answering for him

when he was tested. The answers Ricky programed the device to produce were unmistakably

his own.

Ricky is 21 now. He graduated from high

school with the class of 1983, is taking two courses

at Westfield State College in Westfield, Mass., and

has been admitted to Boston University. He plans

a major in computer programing and will enter
Ch. 2—Case Studies ● 13

the University in January 1984. Meanwhile, he has and his colleagues at Tufts University, largely

been supplied with new communication equip- from Radio Shack components, which has both

ment, designed and assembled by Richard Foulds synthetic voice and print-out capabilities.
3.

Assistive Communication

Systems
3

Assistive Communication Systems

CLASSIFICATION OF ASSISTIVE COMMUNICATION SYSTEMS

Communication systems for the nonspeaking

may be unaided or aided by manmade devices.

Unaided systems are often also described as manual, gestural, or supplementary. While they have

the advantage of needing no external materials,

they are of little use to persons whose arms and

head are paralyzed or who cannot control their

movements. Some of these people can blink their

eyes to signify yes or no, and become quite adept

at conveying meaning by systematically changing their direction of gaze and focus. But this hardly constitutes more than marginal communication

unless the receiver knows the sender’s signals and

can interpret them. For those who use sign language, face-to-face encounters with persons also

familiar with sign language are required. And, as

is true of virtually all unaided systems, sign language cannot be transmitted either in writing or

by most telephones.

Aided systems range from simple language

symbol or alphabet boards without any mechanical or electrical parts that may be made or purchased for only a few dollars, to electronic devices—some computerized—that may have price

tags of $5,000 to $6,000 or more. Whether simple and inexpensive, or costly and complex, or

somewhere in between, all aided communication

systems require the user to tell the equipment what

to say. This is accomplished in one of three ways.

The first is direct selection. An ordinary mechanical or electric typewriter is a typical direct

selection device, but one ill-suited to the many

people with severe speech disabilities secondary

to severe disabilities. Accordingly, direct selection communication aids for this population may

have keyboards that require less manual dexterity than the ordinary typewriter keyboard, or may

have matrix displays on their surfaces of pictures,

symbols, letters, groups of letters, or phrases, or

some combination of these, that the user points

to or presses on as the information he or she

wishes to convey.

Although direct selection devices are far from

as rapid as normal speech and so are somewhat

frustrating to even the most adept users (the more

so because speaking persons are often too impatient to let users complete their thoughts), they

are still intrinsically the fastest way for nonspeaking perons to communicate. Some electronic direct-selection devices have computerized memories that make it possible to compose a fairly

lengthy message in advance and a printing capability that releases this product from storage on

the user’s command. Others make a modicum of

informal “conversation” possible by printing short

messages while the listener is present, or by displaying such messages on small screens in lightemitting diode or liquid crystal display lettering.

Some machines have both print and display capabilities.

Because of their physical limitations, however,

many nonspeaking persons cannot transmit their

thoughts to others by direct selection. Even if they

are supplied with an input link to the device (often

called an interface), such as a foot or tongue

operated switch, a breath-operated sip-and-puff

switch, a joy-stick, or a wand or optical light

pointer (worn on a band or straps around the

head), they simply do not have sufficiently finetuned motor control. For these individuals, electronic scanning devices that make the selection

on the user’s behalf are often more appropriate.

With these devices, the user scans a “menu” of

possible choices and selects one by means of a simple yes-or-no response. Some of these scanning

devices can also be used in direct selection mode.

Scanning communication devices differ in detail, but all of them present the user with: 1) components of vocabulary -i.e., numbers, letters,

groups of letters, words, phrases, pictures, symbols, etc., or some combination of these; and

2) an indicator mechanism on the display that

serves as a pointer. With an input attachment for

this kind of selection (and sometimes without one,

17
18 ● Health Technology Case Study 26: Assistive Devices for Severe Speech Impairments

for example, if the person can use his elbow or

balled fist for input), nonspeaking persons can

have these communication aids sweep the field

until the desired place on the display is reached

and then simply instruct the pointer or indicator

to come to a stop. Again, this makes person-toperson interactions possible. Some of these devices

also either have printing capabilities or can be connected, for an additional investment, to separate

hard copy printers.

A third form of personal communication aids

are those that operate by encoding. That is, their

inputs go into the unit in the form of numbers,

for example, and these are then electronically converted into written or synthetic speech outputs.

As a general rule, encoded systems offer the user

larger vocabularies and more flexibility than direct

selection on scanning units and more speed than

scanning units. Their disadvantages are that:

1) some are not portable though this may change

as newer models employ miniaturized computer

components, and 2) it generally takes longer to

learn to use these units proficiently and requires

a considerable amount of cognitive ability. For

example, encoded systems may entail activating

two switches simultaneously or several switches

sequentially, making their operation somewhat

complex.

Still, an encoding system is probably preferable

to either direct selection or scanning because of

its speed and versatility, providing the user is sufficiently motivated, intelligent, and cognitively intact. Professor Wesley R. Wilson and his colleagues at the University of Washington’s Child

Development and Mental Retardation Center developed one prototype encoding system for severely physically disabled clients of normal intelligence who can spell at least at a grade 4 level.

The basis of this system is Morse code (23,25).

Properly selected subjects—most of them cerebral

palsied children—have been able to learn it with

80 to 90 percent or better accuracy within a

month. The inherent drawback of the code—that

both sender and receiver must know it—is overcome by a microprocessor that converts the dots

and dashes into printed letters. The system can

also be supplied with an attachment for synthetic

voice output.

The core of this Morse code communication

system is a computer mounted on the base of the

client’s wheelchair that is linked to two head

switches, one to signal dots and the other to signal

dashes. The switches activate a second communicator unit fitted to the front of the wheelchair

(it swings out of the way when the user wishes

to move from the chair) that has a liquid crystal

display screen—visible on one side to the user and

on the other to his listener—and a small printer

for hard copy. Other capabilities of the system

include an emergency call system, environmental controls, an optional synthetic voice output,

and an interface for Apple computers. When programed with special software, Apple computers

can increase the speed of communication by permitting the computer mounted to the wheelchair

to guess, with some accuracy, words that the user

has started to spell. (The user can cancel the message if the computer’s guess is incorrect. ) The entire system is powered by rechargeable battery.

Once the user is in the chair and someone turns

the system on, all the system’s features are at the

user’s command.

Communication systems for people who are

nonspeaking and severely physically disabled

have been discussed thus far with regard to

whether the systems are aided or unaided. They

can also be considered from another perspective:

as designed from the outset for a disabled population or as designed primarily for able-bodied users

but usable, if modified, for the nonspeaking neurologically or neuromuscularly impaired.

There are probably well over a hundred systems

of the first type, many of them one-of-a-kind

models made in home workshops for a family

member or friend. But no more than 40 to 50 of

them have been marketed, and their sales volumes

have been small, numbering at most in hundreds

of units per year. (This will be discussed further

in ch, 4.)

Systems designed primarily for able-bodied

users include some battery-powered devices that

can be used by nonspeaking disabled people without modification, providing they have sufficient

manual dexterity and muscular control to operate

them: the Texas Instruments Corp.’s synthetic educational aid, “Speak and Spell” (which has a
Ch. 3—Assistive Communication Systems ● 19

retail price of about $60), and its learning aid, the

“Language Tutor” (which has the same synthetic

voice component and sells for about $1.50) have

been employed by some of the nonvocal both for

face-to-face conversations and to convey information over the telephone—though their use for

the second purpose is cumbersome.

The more recently introduced Sharp Electronics

Co. Memowriter, widely advertised to executives

in airline flight magazines, appears to serve the

same purposes as the Canon Communicator discussed earlier: both are portable keyboard devices

that print short texts on a narrow roll of paper

tape. The Sharp product, at $130, costs less than

a third of the $594 Canon, is smaller and lighter,

and—with its calculator functions and 40 shortage keys for phrases—is more versatile and sophisticated electronically. But the Canon Communicator, unlike the Sharp instrument, is available from the manufacturer with keyboards for

the motor-impaired or with a pencil-like headstick

for those who cannot use their fingers at all.

However, an augmented keyboard for the Memowriter is made in Canada.

Two other developments may open even greater avenues of communication for those who can

neither speak nor write by normal means.

One rather recent development is the design of

products for the handicapped that can be mass

produced but readily customized by the manufacturer for any given user. Such products represent

a middle ground insofar as they are intended for

a market that is smaller than that composed of

able-bodied people but larger than that composed

only of severely physically disabled persons who

cannot speak. Thus, these products have some potential commercial advantage.

The Ability Phone terminal, made by Basic

Telecommunications in Fort Collins, Colo., exemplifies this design trend. The purpose of the unit

is to permit a severely disabled user to receive and

transmit information by telephone with much the

same freedom of an able-bodied caller and to further the disabled user’s independence by providing

an electronic reminder, a calculator, and a dialfor-help capability. Relying on microprocessors,

the unit can also turn on or off as many as 15

lights and appliances.

The unit’s versatility lies in the compatibility

of its core with an extensive selection of accessories. The unit can be ordered with precisely the

options a client needs. These options include a

braille keyboard, a synthetic voice output, and

a variety of types of operating switches, microphones, and handsets among others. The base

price of the unit which became commercially

available in September 1981, is $2,335; the total

cost of the system, depending on the accessories

selected after client evaluation, can run as high

as $3,300.

The second important development is the design of products primarily for an able-bodied person that can also be used by severely handicapped

persons with a variety of disabilities. Unlike the

core unit of the Ability Phone which is designed

primarily for handicapped persons, the core unit

of these products is designed primarily for the far

larger market of able-bodied consumers.

The preeminent example of such a system is the

relatively inexpensive personal computer (retailing at about $2,000 or less), such as those marketed by Apple and Radio Shack. With relatively simple modifications, these microprocessors can

be made not only the basis of communication systems for the multiply handicapped nonvocal, but

can also operate environmental controls (e. g.,

light switches, appliances, radios, television sets,

and electronic door openers). If the price of personal computers continues to drop as expected,

it should become possible to provide these users

many capabilities and for a fraction of the cost

it now takes to provide them separately. Both Apple and Radio Shack computers have good reputations for reliability and local repair service. But,

as this was written, Apple machines had the edge

because workers in the handicapped field found

their electronics easier to modify.

As microcomputers have become mass market

items, they have attracted the attention of computer hobbyists as well as rehabilitation professionals. These amateurs can be enlisted to adapt

commercially available educational and recreational software programs for the needs of disabled

individuals, to write programs for the disabled

population from scratch, and to write programs

that speech and other professionals can use for

testing.
20 ● Health Technology Case Study 26: Assistive Devices for Severe Speech Impairments

This use of small computers may provide a

psychologically healthy aura of normalcy and

sophistication to physically disabled nonvocal

individuals and suggest to them that computer operation and computer programing are potential

sources of employment. It may also facilitate their

academic work. The Maplewood Apple 11 Computer Project, which began in 1978, demonstrates

the last benefit well (25).

Maplewood is a special education facility for

moderately to profoundly handicapped children

that serves 36 elementary and junior high schools

in the Edmonds School District, just north of Seattle. Some of its clients attend regular classes at

regular schools and go to Maplewood only for

support services (Group A). Other clients attend

classes in regular schools, but in classrooms set

aside for the handicapped, and go to Maplewood

for support services (Group B). Still others are sufficiently physically and mentally disabled that

they go both to school and get their support services at Maplewood (Group C).

Nonvocal children are found in all three groups.

Such children in Group C—of mental age 12 to

24 months and thus, severely cognitively impaired, are being motivated by motor-training

computer games. Their counterparts in the other

two groups were exposed to the Apple 11 through

computer games and then, having gained adequate mastery of the essential operative techniques, have since used it for academic work as

well. Though the degree of sophistication with

which each group could use computers varied,

computers have clearly helped all three of them

come closer to achieving their maximum potentials.

The progress of the Group A students has been

particularly dramatic. One of the children was delayed by his severe physical limitations in controlling the computer, an obstacle that has only recently been overcome. But the other three children—in grades three to eight—have made substantial gains in reading, spelling, and arithmetic

and have progressed to the point where they can

use commercially available educational software

programs instead of individually tailored ones.

Since relatively few educational software programs are marketed for children of preschool or

early elementary school levels and all three of

these youngsters are now beyond those points,

this is a special boon. When one of the Group B

boys had the opportunity to use one of Maplewood’s Apple II Computers at home during the

summer, he fairly quickly became able to use

commercially available educational software programs, too.

In the interest of the best possible fit between

client and communication systems, the assessment

begins with determining the strength, as well as

the disabilities, of the prospective user. The composition of assessment teams varies, but may include—in addition to the client—professionals

from the following disciplines: speech-language

pathology, audiology, linguistics, psychology,

physical therapy, occupational therapy, rehabilitation engineering, social work, and education.

(Note: the terms speech-language pathologist and

speech therapist are interchangeable, but the

former term is preferred. ) The American SpeechLanguage-Hearing Association’s official position

on assessment for the severely physically disabled

nonvocal population is:

The central role in initiating and coordinating

the services of this team should be taken by the

person most likely to initiate the recommendation for an augmentative communication system,

based on his/her evaluation of the client’s oral

motor performance, language competence, and

communication needs: Further, the person needs

to possess the knowledge of language development and communication interaction which will

be essential to the client’s success in augmentative

communication. In most cases the speech-language pathologist would be the person who best

meets these requirements.

One goal is to provide an interface device (between the person and the communication device)

that requires the least effort and provides maximum reliability. A movement that is too difficult

or tiring will cause frustration by being needlessly slow or inaccurate, and the extended use of an

abnormal reflex pattern can itself produce physical

deformity. Thus, the assessment also encompasses

measuring the client’s range of motion and determining with some precision to what degree he or

she can “fine tune” the movement or movements

that might be used as the link between the body

and a communication aid.
Ch. 3—Assistive Communication Systems ● 21

The choice to be made among many types of

interfaces (different sorts of switches, keyboards,

head wands, mouthsticks, nightsticks, etc. ) often

makes assessment difficult. One systematic approach to the problem has been that of Margaret

R. Barker of the Rehabilitation Engineering Center, Children’s Hospital at Stanford University; and

Albert M. Cook of the Assistive Devices Center,

California State University, Sacramento (2). In

evaluating the physical ability to control assistive

aids, these investigators and their colleagues make

an inventory of all the anatomic sites where a person can demonstrate purposeful muscular movement and then have the person use those sites to

perform such tasks as grasping or squeezing an

object. Other factors being equal, hand and finger

sites are preferred to sites on the head, and sites

on the head to those on the feet. Sites on the legs

and arms are least favored because, in general,

muscles there are least suited to finely controlled

movements.

Once one or more promising anatomic control

sites are identified in this manner, the next steps

are to determine:

1.

2.

3.

how much control (i.e., range and precision

of motion) the client can demonstrate with

each site;

which types of interfaces work best for the

person at the potential control sites; and

how rapid and accurate the client’s movement is at each site and interface combination, and with each combination how quickly the client tires.

This constitutes the first comparative testing of

site-interface combinations, which are thus rank

ordered. Together with the client’s preference, this

testing helps the rehabilitation team to avoid

guesswork in recommending interface choices and

to clearly delineate what tradeoffs should be considered before a final decision is made. Barker and

Cook believe that followup evaluations at 3

months, 6 months, and 1 year are critically important. If the initial choice of interface proves disappointing, these evaluations provide the opportunity for adjustment or change.

Considering the client’s posture is no less important than considering the interface. Many severely physically disabled nonspeaking people use

wheelchairs. This means that unless the client is

properly positioned in the chair (by cushions, padding, restraints, straps, etc. ) and the placement

of the communication aid is made appropriately,

the client may be unable to use the aid efficiently.

Unfortunately, many of the current generation

of portable communication aids are too bulky,

too heavy, or both to be used by those physically disabled nonspeaking persons who can walk.

Even when an aid is small enough and light

enough for such a client to use when he or she

is ambulatory, careful attention must be given to

exactly how the client will wear or carry it and

to its durability. Ambulatory people with movement disorders are subject to inadvertent collisions

with inanimate objects and to frequent falls.

In fact, ease of maintenance and access to timely

repairs at moderate cost can make the difference

between appropriate and inappropriate devices for

all nonspeaking clients, regardless of whether their

units are portable. Because many of these devices

may be made or serviced far from where the clients live, reliability is also a factor that the assessment team should not overlook. Few, if any,

school districts have repair and maintenance

staff trained to service high-technology, computer-based communication aids making this the responsibility of manufacturers and distributors

who are not always in a position to do the job.

Of course, even where there are such services for

students, they are not usually available to nonstudent clientele,

Assessment is also directed toward testing a

client’s actual or potential language skills and his

or her style in responding to verbal stimuli and

in arranging objects, pictures, symbols, words,

or letters into larger units of communication. A

client who is to use a scanning device, for instance,

must be able to remember what he or she is looking for long enough to find it on a display of multiple-choice items arrayed in rows and columns.

No matter what type of communication aid is considered—except perhaps if it is to provide only

a choice of “yes” or “no’’-the user must be able

to discriminate between like and unlike items, to

put ideas in logical sequence and to classify.

An important aim is to determine (regardless

of how the client was previously able to commu-
22 . Health Technology Case Study 26: Assistive Devices for Severe Speech Impairments

nicate) whether the client has receptive language

abilities, to what degree, and how best to utilize

them. Some nonspeaking persons, for example,

are at least temporarily incapable of using the

alphabet, and for them a pictorial language like

Bliss symbols—also called Blissymbolics—may be

either the best language they can master or a way

station toward later learning to read and spell

(17,24).

Blissymbolics is a graphic, meaning-based system, in use in 15 countries, that enables anyone

who can point to a symbol display, or control a

device that presents these symbols, to communicate. Because the user selects and transmits the

meaning elements of the message—i. e., the symbol—he need not know how to read, spell, or analyze words into their phonetic components. And,

because a written word or group of words always

accompanies the message, Blissymbolics can be

understood by any receiver who can read. Other

clients may already know how to read and spell

or may show immediate promise of being able to

learn to do so. Without appropriate optimal assessment of such language abilities, the chances

of an optimal match between client and communication system are remote.

It is important to remember, too, that advances

in communication aids are to be expected and that

the needs of nonspeaking persons may change

over time. For those whose disabilities are likely

to be stable—e.g., most persons whose lack of

speech is congenital—a trade-in or refitting option could enable them to take advantage of technological improvements as they come along. The

communication system that serves a 5-year-old

cannot be expected to serve an older child or an

adult. Similarly, persons with such progressive

disorders as multiple sclerosis or amyotrophic

lateral sclerosis (ALS) who today can function

with one kind of communication system may need

quite another kind as their condition deteriorates,

something that can happen in the span of only

a few months. Yet insofar as the author could

determine, few manufacturers of personal communication aids make provisions for trade-ins or

component refitting, and there are few loan or

rental banks of these devices organized by hospitals, clinics, voluntary groups, or other community organizations.

Thinking differs as to when in the assessment

process it is best to even provisionally expose a

client to a choice of commercially available communication aids. In a study of 16 ALS patients

in Britain, Perry, Gawel, and Rose recommended

“that a ‘library’ of aids be available to patients

so that a good choice may be offered and, as the

disease progresses and manual dexterity diminishes, they may exchange one aid, which is no

longer appropriate, for another that meets their

needs more realistically” (34). This is also the view

of many workers at U.S. education and rehabilitation centers who believe that, whatever the reason

for their clients’ inability to speak, having an

array of aids on the premises would not be only

advantageous to them, but would also serve to

familiarize the staff with the devices on the market

and new ones as they are introduced.

There are others, however, who believe such

a “library” of aids requires too much financial

outlay or is undesirable on other counts. For instance, Bruce Gans, Director of Patient Services

at New England Medical Center’s Rehabilitation

Institute in Boston, believes that “to have an array of technical equipment is a very restrictive approach to the problem (of assessing nonspeaking

persons because) you immediately presume that

your universe of options is right in front of

you. . . . First of all, one must define what the

patient’s real needs are” (14).

At The Children’s Hospital in Boston, Howard

Shane, Director of Communication Enhancement,

says that a library of devices would not only be

expensive and unnecessary, but would take up too

much space. Instead, his unit asks distributors to

supply videotapes of what their products look like

and how they operate so that clients (some of the

adults) and their parents can view them. If it is

decided that one or another aid may be appropriate, a trial period is arranged before a recommendation is made to purchase (41).

Obviously, this is a controversial topic. It

should be reported, therefore, that the Institute

of Neurological and Communicative Disorders

and Stroke (a part of the National Institutes of

Health) has awarded Richard Foulds of the New

England Medical Center a contract “to develop

a prescriptive assessment system to determine the
Ch. 3—Assistive Communication Systems ● 23

characteristics of the device most suitable for a

particular patient; to review, using computer software, the various devices available; and then to

select that which best matches the necessary specifications. This approach does not require a center

to have a large selection of devices on hand. ”

Completion of the project is expected in 1985 (32).

Meanwhile, Shane, like Gans, believes that not

having a variety of devices on the premises of an

assessment center minimizes the risk of prescribing

one when it may be inappropriate or premature.

He and his colleague, Anthony S. Bashir, have

been particularly interested in persons—most of

them cerebral palsied—whose communication disorders are congenital. In this connection, they

have developed a branching type assessment matrix for recommending a device or not that takes

into account:

1. the age, physical, and intellectual status of

the client;

2. other factors, such as whether or not the

client has previously had speech therapy;

and

3. the family’s willingness to allow the child to

be fitted with an augmentative communication system (42).

If, despite speech-language therapy, for instance, a 3-year-old is still unable to imitate speech

and word sounds with some accuracy, he or she

may make greater communication strides by being introduced to an alternative system, which

may later facilitate speech development. In a study

done at the University of California, Los Angeles,

in fact, Laura Meyers found that starting such

children with communication aids encouraged development of language and that as the children

developed spoken words they dropped them from

communication aid use because the spoken word

was so much faster (27,28).

On the other hand, many parents find it hard

to accept the possibility that their child may never

talk. Thus, while it is in one sense to provide a

communication aid immediately, professionals

sometimes find it prudent to delay the description pending more counseling for the parents.

However, as children develop spoken words, they

tend to drop them from communication aid use,

which parents should be told.

Just as philosophies differ as to whether assessment centers should have libraries of commercially available devices on hand, they also differ as

to whether—other considerations being equal—a

display or voice output is preferable. Although

the situation is subject to change, all off-the-shelf

commercially available devices now offer onl y

one or the other capability.

Some speech professionals believe with Professor John Eulenberg of the Artificial Language Laboratory of Michigan State University that, if a

client is to have only a single mode of communication, voice output is more likely to facilitate the

normal socialization of nonspeaking multiply

handicapped persons of any age. Furthermore,

most children prefer spoken output. But others

are of the opinion that, for children, especially,

such a choice is unwise.

Gregg C. Vanderheiden, Director of the Trace

Research and Development Center for the Severely Communicatively Handicapped at the University of Wisconsin is among those who represent

that opinion (50). According to Vanderheiden,

It would be good to have voice output as a

part of any system. But the key is that, although

you can use writing for conversation, you can’t

use conversation for writing. And, besides, no

current voice output system approaches the

speed of conversation anyway. Thus, if you are

going to have any educational work, any kind

of learning, you need to have a system that will

enable you to write. In fact, the thing we have

to watch out for as voice output systems become

cheaper and cheaper is that we don’t end up with

voice output aids only, thereby ignoring the

other communication needs of physically disabled nonspeaking youngsters and so sentencing

their futures to dead ends.

On the other hand, many people who once

talked and can no longer speak, particularly welcome a speech output device no matter how cumbersome or slow. There are two main problems

regarding voice output devices. One is that many

physicians are unaware of the existence of these

products, (They include two models of the HandiVoice and the Vois, all distributed by Phonic Ear,

Inc., Mill Valley, Calif.; the Express Three made

by Prentke-Romich, Shreve, Ohio; the Words

Plus device marketed by Words Plus, Sunnyvale,
24 . Health Trchnology Case Study 26: Assistive Devices for Severe Speech Impairments

Calif.; the Dec Talk, a nonportable device

marketed by the Digital Equipment Corp., Maynard, Mass.; Vocaid, a product of the Texas Instruments Corp., Dallas, Tex.; and the Form-aPhrase Possum.)

The other is that the synthetic voice most of

these products use is undeniably male. Synthetic

female and children’s voices are already a reality

and are available for some devices, but have yet

to be applied to many assistive communication

aids because they are technically more difficult

to achieve (they take up more memory space on

an electronic chip than do male voices) and so are

more expensive—though it is thought that advances in chip technology being made by such

PSYCHOLOGICAL ISSUES

While it seems evident that inability to speak,

in combination with other disabilities, has profound psychological consequences, this is an area

that merits systematic research as it has been little studied to date. For those newly in the ranks

of the nonvocal it has been informally observed

that, as with any physical handicap, there are sequential stages of denial and isolation, anger, bargaining, depression, and acceptance analogous to

the five stages of dying that have been described

by Elisabeth Kubler Ross (20). This does not

necessarily mean, however, that all those who lose

their speech pass through the entire Kubler-Rosslike sequence or want an augmentative communication system even if they do.

At a patient advocacy meeting held in May

1981 at the Northridge Hospital and Medical Center in Northridge, Calif., near Los Angeles, for

instance, one young man in his twenties—whose

loss of intelligible speech was associated with

quadriplegic incurred in a motor vehicle accident

over a year earlier—made it clear (through a

speech therapist who knew him well enough to

decipher his meaning) that he was still too angry

at what had befallen him to accept this kind of

help. Similarly, a 29-year-old woman with advanced multiple sclerosis that had rendered her

speech so ineffective that her meaning had to be

guessed at, indicated strongly that she wanted

nothing in the way of a technical speech aid.

firms as the Votrex Co. in Troy, Mich., will largely eliminate the cost differential.

Then too, it is not yet clear that a male voice

for a child or a woman is necessarily a disadvantage. Some children, for example, apparently like

having an adult male voice because it makes them

feel important. According to John Eulenberg, of

the Artificial Language Laboratory at Michigan

State University:

This is an area that really hasn’t been adequately investigated. We are just on the threshold

of a period of discovering what the prime factors are in voice output communication aids that

are important for personal identification and

psychological robustness (10).

On the other hand, this kind of response is not

universal. At the Clinical Center of the National

Institutes of Health, for instance, speech therapist

Barbara C. Sonies reports that speech aids for terminal cancer patients unable to talk have made

it possible for them to maintain communication

with their families. And, this has meant a great

deal to those families both when the patients were

still alive and when ultimately some died of their

disease (44).

Perhaps the most extensive exploration of this

topic to date has been made by David Beukelman,

speech pathologist in the Department of Rehabilitation Medicine at the University of Washington,

in collaboration with Pat Misuda, a speech-language pathologist, and Carole Lossing, an occupational therapist, both at Harbor View Hospital in

Seattle (3,5). Their work has been with adult patients in an intensive care unit. Some of these patients have had a chronic degenerative illness, such

as ALS, where loss of speech was a direct consequence of the disease process. Others were patients with leukemia and other diagnoses who, in

the course of their final hospitalizations, had to

be intubated in order to be supported on respirators, which also made speech impossible.

These investigators have found that patients in

the terminal stages of an invariably fatal illness

do not have the emotional reserves to use an aug-
Ch. 3—Assistive Communication Systems ● 25

mentative speech aid unless they have been familiarized with the equipment in advance. Their

practice has therefore been to broach the subject

with the patient and patient’s family well before

speech becomes impossible and to introduce them

then to the various devices that might be used to

compensate for an inability to speak, should it

later occur. The patients then have time to learn

to use whichever device is likely to be most appropriate (language board, scanning device, direct

selection print output device, synthetic speech output device, etc.). If the patients cannot talk when

they are dying, many are then able to communicate with the chosen device until a day or two

before the end.

Beukelman and his colleagues suggest, therefore, that hospitals keep banks of augmentative

speech aids and rent them just as they rent radios

or television sets. In their experience, it is not only

the intensive care patients dying of protracted illnesses who can benefit, but also intensive care patients with better prospects for recovery but who

are temporarily partially paralyzed, or otherwise

immobilized, and unable to speak.

Patients in the second situation often become

temporarily psychotic, thus complicating their

nursing care. For example, a 23-year-old teacher

with Guillain-Barré syndrome who had to be supported on a respirator and a 16-year-old boy

whose acute cardiac illness necessitated multiple

intravenous lines were both hallucinating, having nightmares, and exhibiting other signs of profound disorientation—largely because they could

neither speak nor move. As both had limited hand

motion, they were provided with the Canon Communicators previously described. Once shown

how to use the devices, these patients became calm

and rational within hours. The investigators

believe that since emergency rooms often treat

patients with similar symptoms, augmentative

communication aids may also be useful and cost

effective in that setting.

In addition to the type of nonvocal persons just

discussed, there are those who have been born

with serious physical handicaps including the inability to speak. Most of these are diagnostically

classified as having one or another form of cerebral palsy (CP). Many of them have little or no

voluntary control of motion.

Older CP children and adults who fit this description have become capable of “speaking” and

“writing” because of recent advances in communication aids and in computerized communication

aids especially. A few, in fact, have been able to

complete high school, continue to college, and

may even be able to pursue graduate degrees. Microprocessor equipment has allowed them to prepare full sentences and full texts rather than be

restricted to simple yes-no or multiple-choice responses. Certainly this should mean that many

will become employable and that the pool of such

individuals should grow as school systems open

up to them so that the onset of their education

is not as long delayed.

Still, not all nonvocal CP persons of comparable intellectual ability have been able to master

microprocessor equipment when it has been made

available. And presumably even those who have

achieved such mastery could have done even better had they become familiar with it earlier. It

seems reasonable to ascribe this unevenness in

aptitude largely to the limited opportunities for

cognitive development many CP children have

while they are of preschool age (15).

Physical activity under voluntary muscle control is acknowledged to be the foundation on

which language is built. Through such activity,

young children learn to distinguish self and nonself, the relationships of objects to each other by

size, shape, and weight, and to manipulate and

control objects and people in their environment.

Nonvocal CP children who cannot draw pull toys,

cannot activate windup toys, cannot imitate the

sounds and the behavior of what they see around

them—in short, who cannot on their own explore

themselves or the world—tend to come to these

and other concepts late if they come to them at all.

Said another way, the mind and body are partners in the cognitive development of the young

child. As Goldenberg observes, there is truth to

the old proverb: “I hear and I forget; I see and

I remember; I do and I understand” (15). Verbal

abstractions, while they can and do result in learn-
26 ● Health Technology Case Study 26: Assistive Devices for Severe Speech Impairments

ing and autonomy, probably do not produce them

as efficiently as does the child’s physical experience

with the world.

Are the disabilities of the nonverbal child largely or wholly remediable before he or she reaches

the age when children normally begin to undertake academic work? There is no definitive answer

to that question at the present. Nonetheless, preliminary results from several research programs

suggest that the answer may be yes. Three such

programs will be briefly mentioned here.

One of these is the Intervention Project of the

University of California, Los Angeles, directed by

Laura F. Meyers, an early language development

specialist. In a pilot project conducted in 1980 and

1981, Meyers and her colleagues worked with six

nonverbal children (four boys and two girls)

whose handicaps included mild to severe cerebral

palsy, Down’s syndrome, developmental delay,

and expressive language problems, and who were

27- to 37-months old when the study began

(27,28).

Four different commercially available assistive

communication aids were introduced to the children to determine if the devices would increase

their use of oral and gestural language and would

expand the number of words they used. It was

also thought that this strategy might improve the

youngsters’ attention spans, scanning skills, and

eye-hand coordination, as well as present them

with an opportunity to learn first-hand about the

principle of cause and effect.

All these expectations were confirmed to a

greater extent than had been anticipated. However, gains were greater when the children used

the HandiVoice 110, which has a synthetic speech

output, than when they worked with the three

other devices that offered only visual displays.

One child, for example, who had learned only 10

words during a whole year of previous speech

therapy imitated and said 25 new words during

the very first session he “met” with the HandiVoice. Meyers believes that the critical factors in

such improvement were the children’s control of

speech output, the reward of hearing what they

wanted to say spoken exactly the same way each

time, and the fact that the children felt less

threatened by a machine than they would have

by an adult who wanted them to perform.

A second example of successful training of the

nonvocal has been observed using the “Turtle,”

a computerized robot toy retailing for about $600,

which is manufactured for schools by Terrapin,

Inc., in Cambridge, Mass. By linking the toy to

a larger computer to augment its “brain power, ”

E. Paul Goldenberg and his colleagues made it

briefly available to severely handicapped nonvocal children, who could make it respond to their

commands by operating a switch that was appropriately configured and engineered (15).

Ordinarily, for example, these children were

unable to knock over a pile of blocks. But when

the turtle was programed with the proper software (easily written in any of several computer

languages), they were able to guide the robot

across the floor to do exactly that. Moreover, by

fitting the turtle with a pen, the children were able

to instruct the toy to draw whatever they

wished—whether something they had actually

seen or a fantasy design—on a piece of paper

taped to a table or the floor. The phrase “whatever they wished” is key.

A device such as the robot gives the child a

chance to initiate play experiences rather than

merely follow the suggestions or requests of

others, a situation that fosters autonomy and

education readiness. It may also reveal aspects of

the child’s potential that would otherwise go unnoticed. The manner in which a child comes up

with an idea and generates plans accordingly, as

demonstrated by his interactions with this sort of

equipment, provides insights into his capabilities

that probably could not be obtained by other

means.

Although Goldenberg reports that the robot

Turtle has been used primarily with older handicapped children and adolescents, robot toys in

conjunction with computers could very likely be

employed to give many preschool nonvocal CP

children an early advantage in developing their

cognitive and language skills. While some might

object to this arrangement as too costly, the price

of microprocessor components is dropping, and

the potential savings of reduced special education and institutionalization are appreciable Estimates of the costs of lifetime institutionalization

for a totally disabled person start at $500,000 and

go up.
Ch. 3—Assistive Communication Systems ● 27

The early development of motor-thinking skills

in this particular disabled population was also to

have been the focus of a 4-year computer-assisted

research project that had been approved for funding by the Department of Education but was suspended because of budgetary constraints before

full implementation (52). The multidisciplinary

team at the Child Development and Mental Retardation Center at the University of Washington

headed by Wesley R. Wilson, had planned to:

1.

2.

analyze the motor-thinking elements required by users of communication devices,

and educational computer programs, both

current and proposed; and

develop a set of graduated motor-thinking

tasks and corresponding software programs

for the Apple II personal computer that the

preschool children participating in the project could operate with a single switch.

Wilson and his colleagues had thought that the

sequences of games and other play opportunities

offered by the software programs would stimulate

the intellectual maturation of the handicapped by

providing them some of the experiences of their

nonhandicapped peers, experiences that they are

unable to have on their own. They had planned

to use color, graphics, action, and sound as stimuli, feedback, and rewards. While it remains to

be seen how effectively computers can substitute

for normal sensory-motor activities, it would not

be surprising if early familiarization with microprocessor technology accelerated the ordinarily

delayed rate of learning of nonvocal children and

facilitated their eventual integration into “regular” classrooms.

If so, the planned project, if it is ever implemented could be readily repeated: the more so because the Apple II, retailing at about $2,000 is

moderately priced, as personal computers go, and

so are most of its necessary accessories. Once designed and tested, it was expected that the special

computer software would be relatively inexpensive, too. Since there is now very little educational

and recreational software for disabled children below the fifth grade, Wilson and his colleagues

believe there would be a sizable market for the

programs they had in mind.

TRAINING AND RESEARCH ISSUES RELEVANT TO THE LIMITATION

OF CURRENT ASSISTIVE COMMUNICATION AIDS

The mastery of many technologies for handicapped people is fairly straightforward. While it

takes some getting used to, for example, walking

on crutches holds few mysteries. And once familiar with motorized wheelchairs, users need do little more than turn them on and off and steer them

to have them under control.

Not so with assistive communication aids for

the severely physically disabled who cannot talk.

Because of the complexities of language, because

of the limitations of these aids in the face of such

complexities, and—most of all—because communication is a dynamic process between sender and

receiver, learning to operate these devices is only

the beginning of a far more demanding task.

Normal speech proceeds at a rate of about 100

to 200 words per minute, whereas an output of

2 to 10 words per minute is usually the best that

can be attained with the present generation of

commercially available augmentative communication systems. This disparity requires accommodation by the nonvocal and their audiences alike.

As one researcher in the field has put it:

We have concentrated so much on giving individuals an aid that will let them get a word or

words out with printed output or high technology voice output that we’ve sometimes completely forgotten that it is not nearly so much one

mode of expression or another that makes it hard

for these people to communicate as that all

modes—whether they are simple language

boards or entail the use of highly sophisticated

electronics—are slow (52).

In addition, most communication aids have displays, electronic memories, or both that restrict

the size of their vocabularies. This means that

some things a normal speaker would say directly

must be said in a more round-about way by the

users of these aids, while there are other things
28 ● Health Technology Case Study 26: Assistive Devices for Severe Speech impairments

that they can only hint at, and still others that

they cannot say at all.

The fixed vocabularies characteristic of many

of the devices also require compromises with

grammar and syntax. The result, at times, is a

staccato or “broken English” effect. To be sure,

some models can be made to communicate anything. But they do so only if the user makes a

laborious effort to string the message together letter-by-letter or phoneme-by-phoneme (a phoneme

is a unit of sound such as the “f” sound of “ph”

or the “sh” sound of “tion”).

Unless given the opportunity to compose the

text in advance, nonvocal people are thus at risk

of losing their audiences by the time they can communicate. Or the audience may become sufficiently impatient to guess the message—not always

correctly—before a person has the chance to fully convey what he or she has in mind.

But it can be as difficult for those in the company of the nonvocal as for the nonvocal themselves to make optimal use of assistive communication aids. This is particularly true in school

settings where there are speaking and nonspeaking students in the same class. Teachers tend to

be inhibited by children who cannot talk and at

a loss as to how to enable them to compete with

their orally fluent peers during classroom activities. All too often nonverbal youngsters do little

else but watch and listen while they are in school.

Can speaking and nonspeaking children be

taught in the same classroom without the latter

being merely bystanders? The answer appears to

be yes (15). But only if teachers take on the task

with adequate preparation and ongoing support.

One of several examples is the Loma Linda University’s Medical Center Augmentative Communication Model Program, funded by the Office of

Special Education of the Department of Education, which operated in schools for the orthopedically handicapped in two California counties

(Riverside and San Bernardino) from September

1979 through August 1982 (11). Through this program, a team of speech-language pathologists

went into the schools to show teachers how to

assess nonoral children, how to adapt workbooks

and other curricular materials for their use, and

how to conduct classes so that the nonspeaking

pupils as well as the speaking ones could participate.

Thus, the integration of nonspeaking and

speaking persons in group situations appears a

feasible goal, but not one achieved without effort.

Whether it can be accomplished through instructional manuals rather than through the actual

presence of specialized and experienced personnel is a question still to be resolved.

In general, while augmentative speech systems

are obviously a great deal better than nothing,

they are, as Arlene Kraat has pointed out, “only

vehicles through which communication and (social) interaction can be achieved” (19). Without

training a client in strategies aimed at those objectives, an aid is unlikely to be put to optimal

use, even when well matched to a highly motivated user. Developing and refining these strategies is a major research need. So much emphasis

has been put on the devices themselves that there

is a dearth of information about how to make

them actually compensate for an inability to communicate.

More active participation of severely physically

handicapped nonvocal people themselves early in

the research and development process would

probably help in this regard. No matter how wellintentioned, able-bodied professionals simply cannot adequately simulate or assess what such disabled nonspeaking persons actually experience.

Keeping in mind that blind engineers helped to

produce some of the recent advances for the blind

and severely visually impaired, it may be advisable to encourage members of the nonspeaking

population to become engineers, linguists, speechlanguage pathologists, and so forth, if rapid progress is to be made in this field.

It may be, too, that there has been too much

stress on those assistive communication devices

that have the most sophisticated engineering and

electronics. It is not only that they are costly, but

also that the technical assistance that is needed

to modify and repair them is not always readily

available. The author of this study was often told

that more research attention should be directed

to simple and middle range aids and imaginative
Ch. 3—Assistive Communication Systems ● 29

techniques to enhance their effectiveness. It is not

that speech-language professionals believe that the

effort should be abandoned to develop better

high-technology and more sophisticated replacements for speech for the multiply handicapped

nonvocal. That there is plenty of room for improvement is obvious. But, at the same time, they

believe that much could be accomplished by fuller

and more ingenious exploitation of existing aids

and technologies. An example of one problem and

one uncomplicated solution to it may make this

issue clearer (47).

The problem is that a small child for whom the

best way to point is with a regular headstick often

cannot use one unless it is so short that it will point

only to things at very close range and within a

very limited arc. Small lightweight optical lightsticks or lightpens fastened to the head are one

answer to this frequently encountered problem.

Because their beams goon for a considerable distance before they fade out, these devices can serve

as pointers, allowing users to indicate an object

whether it is right in front of them or at the other

end of the room.

More than mere convenience can ride on this

kind of flexibility. A severely physically disabled

nonvocal toddler can be asked at supper whether

he wants, say, a bite of hamburger or a bite of

baked potato next, and using the nightstick, he can

respond no matter where on the plate those items

are. The choice this permits him in controlling his

environment—despite the fact that he may have

to be fed by someone else—fosters a sense of independence that is an important part of nourishing his self-esteem.

Whatever the age of the assistive communication aid client, strategic training considerations

include the following:

●

●

●

●

●

●

assessing the match between the aid and the

potential user’s motivations and abilities;

considering the communication content of

the aid. Persons with some kind of brain injury communicate more effectively with

symbolic or picture “languages” than with

traditional alphabetic systems. Whether

symbolic, pictorial, or orthographic, vocabularies need to be suited to the user;

preparing the user, who has an acquired

speech loss, to accept the constraints on his

expression that the aid imposes and to compensate for them by: 1) preparing texts in advance when possible, 2) saying things more

concisely, and 3) expecting prediction and

anticipation from listeners;

teaching the nonspeaking child or adult who

has never acquired speech to use language

by building on his earlier experience and

longstanding patterns of behavior, emphasizing particularly what to talk about and starting and maintaining conversations;

stressing flexibility by encouraging users to

switch communication tactics when one

proves ineffective; and

making social interaction a higher priority

than perfection of grammar, syntax, or vocabulary (32).

Last, but not least, training ideally should address the environment as well as the user. In other

words, it should also concern itself with the speaking community. Speaking partners of nonvocal

persons can often learn techniques that make communication more efficient and effective. As already mentioned, such cooperation is crucial in

schools, but is also important in employment settings and for families, attendants, and friends.

THE COMPATIBILITY OF SYSTEM COMPONENTS

The effectiveness of commercially available assistive communication aids is not only a factor

of how well the client has been fitted for an augmentative speech system, but also the construction, operation, and design of the equipment itself.

However well a device works for a given user.
30 ● Health Technology Case Study 26: Assistive Devices for Severe Speech Impairments

it is often hard to identify which of its characteristics have contributed to the result unless baseline

and followup data from field studies are available.

Efforts to collect such data are only just beginning. The most ambitious field study to date is

in progress at the Assistive Devices Center of the

School of Engineering at California State University, Sacramento, under the direction of Albert

M. Cook. The Center follows clients at 3-, 6-, and

12-month intervals and has produced reports

(published individually) on nine assistive communication aids as a result. Some of the findings

have been incorporated into product design modifications by manufacturers (7). More of such

studies are desirable both for the information of

nonvocal persons and for that of third-party

payers, who are understandably in need of persuasive evidence that investment in these technologies is worthwhile.

A related problem is the frequent lack of compatibility among the various electronic communication systems and environmental control aids

with interfacing switches and accessories. Vanderheiden and his colleagues point out that “as

might be expected, nearly every researcher and

manufacturer chose a slightly different connector, pin-out, voltage convention or format . . .

(with the end result often being) that the handicapped individual is fitted with an aid, interface, and accessories which do not fit together

well” (45).

To remedy the situation, the International

Standard Interconnection Task Force was organized in December 1980, This task force, composed of clinicians, manufacturers, and researchers from the United States, Canada, and

Europe, has the following objectives:

• develop a common technical format for aids

and interfaces;

● develop a common connector or connectors

for those components; and

● develop a simple, readily understood naming format that will enable people not technically trained to mix and match aids, interface, and accessories to meet the needs of

handicapped individuals.

The task force has its headquarters at the Trace

Research and Development Center for the Severely Communicatively Handicapped at the University of Wisconsin-Madison. It is funded by the National Science Foundation.
4

Information and Funding

for the Speech-Impaired
4.

Information and Funding

for the Speech= impaired

INFORMATION RESOURCES

Ready access to information about appropriate

aids and techniques is vital if the needs of the

handicapped population are to be met. How well

are severely physically disabled nonvocal persons

served in this regard? The author of this study

has found that, although major steps have been

taken to obtain information on this population—

information which was almost wholly lacking as

recently as the mid-1970’s—incomplete and fragmented data collection and dissemination efforts

continue to be a major problem.

Some information resources on the disabled

nonvocal include the following:

1.

2.

ABLEDATA. —This is a computer data base,

funded by the National Institute of Handicapped Research and headquarters at the National Rehabilitation Information Center at

Catholic University in Washington, D.C. Its

capsulized contents are made available to interested parties through information brokers

whose names the Center gives to prospective

clients (anyone who needs the information)

on request. The system has been plagued by

poor funding, a situation reflected in its

print-outs on communication aids. While

they do provide descriptions, price, and

manufacturer information regarding many

systems, not all aids are included in its listings and reports on those that are included

may not always be entirely up to date,

The Non-Vocal Communication Resource

Book.—University Park Press, Baltimore,

$15.95; yearly updates for this looseleaf

binder volume are $7.50. Compiled by the

Trace Research and Development Center for

the Severely Communicatively Handicapped

at the University of Wisconsin-Madison, this

illustrated volume—funded in part by the

Federal Government and in part by the

United Cerebral Palsy Research and Education Foundation in New York—is the most

comprehensive reference in the field. It offers speech professionals, educators, parents,

and administrators concise information

about: 1) commercially available devices and

their prices; 2) some communication systems

under development in research settings; 3)

devices that are not commercially available,

but nonetheless are readily duplicated by,

say engineers affiliated with the special education unit of a school district, perhaps

through a public-spirited church or civic

group; 4) an interface switch profile and annotated list of commercial switches; and 5)

a bibliography. The book, however, does

not pretend to be all inclusive and is really

best described as a very good catalog. Thus,

for example, it provides little or no information about the strengths and shortcomings

of given devices. Nor does it discuss the extent to which any device has been tested in

the field, the clients involved, and the results

obtained.

3. Trace Center International Software Registry: Programs for Hand-capped Individuals.

—Issued in January 1982, this registry,

whose initial cost is $12 and for which there

will be periodic addenda, should serve as

a clearinghouse for information on computer-assisted educational and recreational

materials. The registry lists descriptions of

the programs, manuals for the programs,

computer requirements for the programs,

etc. The reader is also able to learn from

the registry the prices of the programs and

from whom he may order them. Home hobbyists and others who have developed programs, but who do not have the facilities

for manufacturing them, are invited to submit entries. The only proviso is that they

permit the Trace Center to duplicate and

33
34 ● Health Technology Case Study 26: Assistive DeviceS for Severe Speech Impairments

disseminate their products at cost. As in the

Non-Vocal Communication Resource Book,

no attempt will be made in this registry to

evaluate materials described.

4. Communication Outlook.—This quarterly

newsletter, published by the Artificial Language Laboratory at Michigan State University jointly with the Trace Center at the

University of Wisconsin at Madison, the official publication of the International Society for Augmentative and Alternative Communication. It “is addressed to the community of individuals interested in the application of technology to the needs of persons

who experience communication handicaps

due to neurological or neuromuscular conditions. ” The newsletter is an invaluable

source of information, providing its readers

with news about the delivery of clients’ services and about individual users, as well as

about the communication aids themselves.

Communication Outlook accepts advertising and has about 2,000 subscribers who

pay $12 a year to receive it. In addition, it

is distributed to several thousand other people through a variety of channels. As the

first international journal to have brought

together professionals in disciplines that participate in the communication aids field and

their clients, it has also published a comprehensive bibliography dealing with the

many issues involved. The bibliography is

available in printed form and also as an updatable and queriable data base on computer diskettes, containing a program that

allows users to selectively generate subsets

of the bibliography that particularly meets

their needs. The bibliography can also be

accessed with Radio Shack TRS 8-III and

Apple II computers. Annual updating is

planned.

5. Features of Commercially Available Communication Aids. —A wall-chart listing of

both portable and nonportable aids. It is prepared by Arlene Kraat of the Queens College (New York) Speech and Hearing Center. It covers communication output factors,

selection factors, portability, and distribution sources. It is available from PrentkeRomich Co.; 8769 Township Rd., 513;

Shreve, Ohio 44676.

OTHER SOURCES OF INFORMATION

While professional journals like those of the

American-Speech-Language-Hearing Association

(ASHA) (which has a circulation of about 40,000)

and the Journal of the Institute of Electrical and

Electronics Engineers (which has a worldwide circulation of about 50,000), do carry relevant material, it is on a sporadic basis. Besides, there is

no guarantee that these journals will be read by

certain audiences—nurses and physicians, for example—who need to be informed about the subject.

Much the same is true of a wide spectrum of

other publications that are intended as much for

the laity as for professionals. Echo On, a newsletter published by Phonic Ear, Inc., in Mill Valley,

Calif., is an example of such a publication. Its

primary purpose is to publicize the use of the synthetic voice products the company markets for the

nonvocal (i.e., two models of the HandiVoice and

the Vois). It also occasionally covers topics of

related interest, such as assessment and training.

But, as is typical of a newsletter, its articles are

necessarily brief and anecdotal. While they do

provide readers with ideas, their usefulness to professionals and their clients is still limited.

Funding constraints having adversely affected

both periodicals and the compilation of catalogs,

registries, and bibliographies in this field, and also

the publication of conference proceedings. For example, the proceedings of a conference on voice

output communication aids that was held at the

Center for Independent Living in Palo Alto, Calif.,

in spring 1980 under a National Science Foundation award to Telesensory Systems, Inc., of Palo

Alto have yet to be published. Because the award

allotted no funds to organize or disseminate the

products of the conference, these materials have

been put into storage and are not available,
Ch. 4—Information and Funding for the Speech-Impaired ● 35

although a few of the papers can be obtained with

effort from individual contributors.

In time some of the missing information may

be supplied by alternative means under entirely

different kinds of auspices.

A prime example is CONFER, a computerized teleconferencing system, designed by Robert

Parries at the University of Michigan, Ann Arbor and organized by Shirley McNaughton at the

Blissymbolics Institute in Toronto during 1983

(26). Using a computer at Wayne State University in Detroit, the system allows communication

aids professionals and anyone—vocal or nonvocal—with an interest in the field who has local

access to a computer and model telephone device

to have the same kind of interaction they would

have at a conference. Thus, one can send “items”

via the Wayne State Computer and telephone to

the entire group of people who belong to

CONFER or direct messages only to particular

members of CONFER. There is an initial charge

of $50 for this service and any additional charges

are made as more than $50 worth of service is

used. Billing is handled by the Blissymbolics

Institute.

Similarly, in 1981, the National Association of

State Directors of Special Education (abbreviated

as NASDSE and headquartered in Washington,

D. C.) opened Special Net, a 24-hour-a-day, 7-

day-a-week, telephone-access computerized news

FUNDING ISSUES

On May 3, 1981, a Chicago jury awarded 46-

year-old Eileen Tannebaum $6.5 million and her

husband, Louis, an additional $2.5 million for injuries she incurred during surgery that left her a

quadriplegic and unable to talk (37). Some of the

$8 million for which the case was ultimately settled was used to provide Mrs. Tannebaum a cusservice, that has a number of “bulletin boards, ”

and serves 22 States so far.

At present, the $200-a-year service heavily emphasizes legislative developments and other policy

issues in its bulletins to administrators in the

special education field. However, it is hoped that,

as additional subscribers are attracted to the service, the service’s scope will expand to provide

more bulletins focusing on matters of immediate

practical action for special education teachers and

their students. NASDSE may eventually start a

second computerized network to deal specifically with rehabilitation topics. If so, membership

will likely extend to any organization with relevant concerns and perhaps even to individual professionals (43).

At least one organization concerned with the

needs of individual handicapped persons has already tied into the existing NASDSE network. The

California Repository for the Handicapped located in Sacramento has a “bulletin board” that

runs want ads on devices needed and devices

available, whether new or secondhand. At present its coverage is pretty much confined to the

blind portion of the handicapped community in

northern California. But there seems little reason

why other “bulletin boards” could not be organized regionally to serve a wider spectrum of

needs.

tomized communication system, designed by the

Artificial Language Laboratory at Michigan State

University (10). Although larger than most, this

is one of several medical malpractice and personal

injury settlements the author of this study identified that has been used to underwrite customized assistive communication aids technologies.
36 ● Health Technology Case Study 26: Assistive Devices for Severe Speech impairments

However, the disabilities of most severely disabled nonvocal persons are not the result of medical malpractice, and so these people do not have

access to this resource. Nor do they usually have

extensive personal financial means. They and their

families therefore heavily depend on traditional

third-party payers as sources of funds for communication aids. The following federally assisted

and private programs are those pertinent to consider in this regard.

Medicare

It might be expected that both persons who are

over 65 and those who are chronically disabled

would be eligible for payment under terms of the

law. In practice, Medicare has funded communication devices for nonvocal individuals also

unable to write only for use in a hospital or skilled

nursing facility to communicate with staff—in

other words only under Part A of the Medicare

law. In no instance has the Social Security Administration’s Health Care Financing Administration authorized purchase of such devices under

Part B of the law, which would permit Medicare

beneficiaries to make these prostheses part of their

everyday lives (10).

Medicaid

Though this program for the indigent and medically needy is through Federal-State partnership,

decisions are made at the level of State or county

by State or county personnel. Medicaid has

covered communication aids in several States, including California, Oregon, Washington, Wisconsin, Illinois, Colorado, New Jersey, Massachusetts, and New York. In some States, however,

there has been no such coverage, and even in those

States where there has been coverage, it has not

necessarily been in all locales. Approval or disapproval of reimbursement is largely based on the

decisionmaker’s personal interpretation of guidelines, if any, that maybe available. Any funding

that is made often takes months or years to obtain. Clients often face many refusals and must

go through repeated hearing processes to have a

chance to succeed (38).

Civilian Health and Medical Program of

the Uniformed Services (CHAMPUS)

Coverage for assistive communication devices

is specifically excluded from the so-called basic

program that pays for medically necessary services and supplies for the dependents of active

duty or retired military personnel. They also “generally do not qualify” for cost-sharing under the

CHAMPUS program for the handicapped that

provides financial assistance to active duty members for the care, training, and rehabilitation of

a spouse or child who is seriously physically handicapped or moderately or severely mentally retarded. Some exceptions have been made to provide basic communication necessary to accomplish training or teaching of a seriously handicapped individual (13).

Crippled Children’s Services

Like those of Medicaid, these services are administered under a Federal-State partnership, and

like that of Medicaid, funding by locale (38).

Thus, payment has been provided in some States,

but not others, and in parts of some States, but

not all parts. Again, long delays between requests

for funding and the actual provision of it often

cause postponements of months to a year or more.

Moreover, some crippled children’s agencies will

pay indefinitely for traditional speech therapy, but

not for augmentative aids, even though a client

fails to make noticeable progress in traditional

therapy (33).

Social Security Insurance and Social

Security Disability Insurance

These programs provide direct financial assistance to eligible disabled individuals. Insofar as the

author of this study could determine, neither has

allowed reimbursement for communication aids.

Public Law 94=142—Education for All

Handicapped Children Act of 1975

Under this act, State funds for the education

of handicapped children and related services are
Ch. 4—Information and Funding for the Speech-Impaired ● 37

supplemented by Federal grant, providing that

school districts meet certain requirements. Funding for assistive communication devices varies by

State and by school district. Funding has been obtained either on the basis of a child’s individual

education plan (IEP) as required by the law, or

from the local education agency, without reference to the IEP. However, the emphasis in the law

is on “specially designed instruction, ” so that it

is not entirely clear whether payment is to be

made for devices that make that instruction possible. Thus, some school districts and local education agencies have funded assistive devices and

others have refused to do so. When funded under

Public Law 94-142, equipment is only for classroom and homework use; it is generally not available to beneficiaries during vacations. Public Law

89-313 is similar to Public Law 94-142 except that

the beneficiaries it concerns are enrolled in Statesupported or State-operated schools.

Vocational Rehabilitation

Like Medicaid, vocational rehabilitation is

another of the federally assisted, but State-administered programs. The emphasis in its funding is

on whether the requested device will enhance an

individual’s employability. Programs in California, New York, Massachusetts, and Oregon are

known to have reimbursed. However, there may

well be States that have denied funding, and if

the severely handicapped client in question has

no relatively near-term prospects of employment,

denial is usually certain.

Veterans Administration

The Veterans Administration will fund any

communication device prescribed for a person

who has a “service connected disability. ” Should

the individual’s inability to speak not be “service

connected, ” funding for evaluation may be obtained through the Administration’s Prosthetics

Evaluation Centers. In such cases payment for the

actual purchase of equipment is sometimes provided and sometimes not.

Private Health Insurance Sources

Private health insurance sources include the

various Blue Cross-Blue Shield plans and the commercial carriers of health and accident insurance.

Their funding of assistive communication devices

in general depends on the terms of the policy and

the nature of the disability. A growing number

of companies are beginning to offer reimbursement for such devices, particularly if the severely physically disabled nonvocal person has major medical coverage. But some companies (both

the “Blues” and commercial carriers) do so only

on a case-by-case basis, while others do so under

some of their contracts but not others, and still

others do not do so at all. The various field offices of some companies seem to have considerable

latitude in interpreting policy contracts, so that

even a carrier whose overall policy is to provide

payment may not do so in all locales.

Private Disability Insurance

These policies are written by commercial carriers. Chances of their covering assistive communications equipment are good if the aid in question will permit a person to work or will reduce

the costs of his care; otherwise, they are not.

Workers’ Compensation

Workers’ compensation provisions vary by

State. In most States persons eligible for coverage

who need assistive communication devices are

able to obtain funding if the equipment: 1) seems

likely to permit them to return to work, or 2) results in less need for attendant care. The second

is a consideration only in workers’ compensation

cases because it involves a potential cost saving

to the insurer. Others types of health or disability insurance generally do not pay for the hire of

attendants.

Unions and Employers

Both unions and employers may consider funding communication equipment if evidence is furnished that such equipment will improve the in-
38 ● Health Technology Case Study 26: Assistive Devices for Severe Speech impairments

dividual’s ability to function on the job. Unions

have purchased assistive communication devices

in California and New York (39). In principle at

least, employers receiving Federal financial assistance may be required to provide a communication device as a “job accommodation” or “job

modification. ”

Service Clubs

Groups like the Lions, Kiwanis, Moose, Sertoma, and Rotary clubs have an interest in serving the community and have specifically shown

a concern for the handicapped. However, their

funding of assistive communication devices is only

done case by case.

Voluntary Health Agencies

The Muscular Dystrophy Association in New

York City has a loan bank of communication devices that is available to individuals who have a

neurological or neuromuscular disorder that results in loss of speech. However, in 1981, the assoDISCUSSION OF FUNDING ISSUES

There is an old axiom in medicine that when

there are many different treatments for the same

disorder the likelihood is that none of them works

very well. From the perspective of the severely

physically disabled nonvocal person, the same

principle applies in finding a payment mechanism

for the assistive communication device that will

meet his needs: the many potential sources for

funding disguise the reality that reimbursement

can be very difficult and sometimes impossible to

obtain. Because no single agency in government

or the private sector is specifically authorized to

assist this population, all tend to say it is not their

responsibility and try to shift that responsibility

elsewhere.

Little statistical information has been collected

on the number of people who have obtained coverage or been denied coverage for these devices

by third-party payers. Obtaining an approximately accurate count is, in fact, a major research need.

ciation decided that no device costing more than

$100 would be added to the bank. It will keep

those more sophisticated and more costly devices

it already has, but in the future will purchase only

simpler aids such as language boards. Insofar as

the author of this study could determine, this

organization is one of the only two voluntary

health agencies that has gone even this far (48).

The National ALS Foundation manufactures,

markets, and services a communication aid called

the ETRAN Communicator (which helps the user

to communicate with eye movements and sells for

about $20).

No voluntary health agency identified by this

case study includes assistive communication devices in its authorized programs of service. Some

do offer information to clients and their clinicians

on possible sources of funding and regarding what

arguments to make on behalf of applications (39).

Occasionally, a voluntary health organization has

paid the balance of the bill for a communication

aid when, as is usually the case, a traditional thirdparty payer will not pay the full amount and no

other source of funding can be found (6).

Nonetheless, it is evident that funding disapprovals are a major barrier to the rehabilitation

of the multiply physically handicapped nonspeaking population and to manufacturers’ development of assistive communication devices. (More

will be said about this in the section, The Industry

Perspective.) It is also obvious that third-party

payers’ philosophies are frequently: 1) inconsistent

or arbitrary, 2) not necessarily based on rational

premises, or 3) both.

In its administration of Medicare, for instance,

the Health Care Financing Administration (HCFA),

which sets payment policy for the program, does

not cover assistive communication devices of the

types this case study discusses for beneficiaries

who could be expected to use them outside a hospital or skilled nursing home. HCFA’s reason for

the refusal is that this equipment “does not replace

an internal body organ or the function thereof”

(6). The paradox is that HCFA routinely approves
Ch. 4–Information and Funding for the Speech-Impaired ● 39

payments for electrolarynxes for cancer patients

whose loss of speech is due to surgical removal

of the natural voice box.

Like that of the assistive aids in question, the

purpose of these hand-held devices is to enable

patients to communicate for socialization, selfcare, health care, and, when possible, employment. Thus, the significant difference between the

two classes of prostheses—one for patients with

cancer of the larynx, the other for patients with

a variety of other diagnoses—is obscure because

both are means to the same ends.

The word “prosthesis” is, in fact, a term that

third-party payers have referred to in refusing to

reimburse the purchase of assistive communication aids. This rationale has been that the Food

and Drug Administration’s (FDA) Bureau of Medical Devices does not define communication aids

as prostheses—as artificial devices to replace a

missing part of the body. But again, the agency

does so define electrolarynxes, and again, whether

by Medicare or some other third-party payers, denials of requests for the funding of electrolarynxes

are rare.

When FDA was asked why it considers electrolarynxes to be prostheses and assistive communication aids not, the Chief of the Neurological

Devices Branch in FDA’s Bureau of Medical

Devices replied that the term had been avoided

not because the agency truly believes that the second sort of technology is not prosthetic, but rather

to avoid regulating it (31). He said that such regulation had been judged unnecessary from the

standpoint of safety, and that it would impose a

needless burden on a fledging industry. Ironically, that FDA decision would seem to have contributed itself to burdening the industry, as denials

for reimbursement based on this lack of definition have caused manufacturers and distributors

to lose potential sales.

Another term that is often mentioned in denying reimbursement is “medical necessity. ” In contrast to electrolarynxes and certain other forms

of durable medical equipment (wheelchairs, for

instance), assistive communication devices are

often perceived by third-party payers as only “patient conveniences” and are therefore ruled out

for coverage. As most of the target population

are essentially immobile and thus helpless in an

emergency if they cannot communicate, the validity of this argument seems dubious.

The impression of the author of this study is

that many third-party payers will present almost

any reason to deny a request for the purchase of

an assistive communication device. The author

was repeatedly told by manufacturers, by professionals in this field, and by affected individuals

and their families that third-party payers in the

health field often take the stance that this equipment should be paid for by programs whose

primary purpose is educational or vocational

whereas programs with those missions tend to tell

them that the responsibility properly belongs to

organizations that underwrite health care. Some

third-party payers, in fact, have confided to providers that they fear there may be so many nonvocal persons in the population that to provide

all of them with remediation would be to break

the bank.

Clearly, one reason for the problem of funding

is that at a time of fiscal constraint there is an

understandable emphasis on holding down costs,

and expenditures for equipment are often slashed

from budgets first. Another is that the behavior

of personnel in the field office of third-party

payers—particularly those in the private sector—

may not represent the attitudes of the home office management. The varied fates that await

funding applications for assistive communication

devices seem to reflect different values in different

locales, at least where traditional third-party

health payers other than Medicare (i.e., Blue

Cross-Blue Shield, commercial health and accident plans, Medicaid, Crippled Children’s Services, etc. ) are concerned. There was ample anecdotal evidence of this in interviews the author conducted in Massachusetts, Michigan, Wisconsin,

and the State of Washington.

This evidence was supported by the preliminary

results of a study being conducted under a grant

from the National Institute of Handicapped Research (an agency of the Department of Education) by David Beukelman of the Department

of Rehabilitation Medicine at the University of

Washington (4).

A

c

A

d

d

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40 ● Health Technology Case Study 26: Assistive Devices for Severe Speech Impairments

Beukelman is in the process of looking at the

outcomes of about 200 applications for the funding of communication aids that have been made

to traditional third-party payers. He is collecting

his data from hospitals, nursing homes, device

manufacturers, and individual speech and occupational therapists in private practice and school

districts, and has arranged his collection system

so as to protect client confidentiality and to prevent any claim filed on behalf of a client being

counted twice. While his study sample is being

drawn exclusively from Washington, Oregon,

California, Alaska, and Idaho—with emphasis on

the first of those States—it is a sample large

enough so that it maybe representative of trends

in the Nation as a whole.

With the exception of Medicare, Beukelman has

found that no third-party payer has a standard

payment policy for these devices; rather, a diversity of attitudes is found among funding agencies,

according to locale. In the State of Washington,

for example, his data indicate that it has generally been easier to obtain communication aid payments for adults—particularly those aged 20 to

40—whose loss of speech is acquired than for children or adults whose inability to speak is traceable to a condition present from birth. In this case,

potential prospects for employment in the near

future appear to take precedence over the eventual employability and generally greater life

expectancies of nonspeaking persons who are not

yet old enough to leave school. On the other

hand, the situation in California seems to be

somewhat reversed.

Beukelman reports that his data from that State

are too sparse to be reliably indicative of funding

trends. But Montgomery and Hansen have found

that California third-party payers, while generally

unwilling to fund applications made on the behalf

of young children, tend to approve those submitted for clients aged 15 to 25 who are still in

school—presumably because they are on the verge

of entering the labor market and can have little

hope of being employed without some means to

communicate.

Less surprising, perhaps, is that the cost of the

communication device or communication system

is, according to Beukelman’s data, a major factor in determining whether a funding application

is approved. Still, Beukelman has found that acceptance or rejection of a claim is not wholly a

matter of equipment expense. Instead, success

often depends on who is doing the asking and how

strongly and persistently.

A request made on behalf of the patient by

a physician, for instance, is often more readily

honored by a third-party payer than one made

by a speech or occupational therapist, even

though these allied health professionals are generally more knowledgeable in the area than are

most M. D.’s. (Although, the habit many physicians have of merely scribbling the name of the

device requested on a prescription blank appears

to be associated with a high rate of rejection for

reimbursement. )

Similarly, supporting letters funding request to

third-party payers that emanate from health professionals based at hospitals with established reputations for dealing with the target patient population are, for the most part, according to Beukelman’s preliminary findings, taken more seriously than those from their counterparts primarily

affiliated with nursing homes or convalescent

facilities.

Other considerations in funding include the fact

that applications have a greater likelihood of success when they are accompanied by supporting

letters offering persuasive evidence that the device

will enable the patient to function more independently and at less cost to all concerned. * When the

claim submitted is for something with which they

are generally unfamiliar, the processing costs rise

accordingly since more time has to be spent in validating its legitimacy. Thus, rather than spend

time and money, it is often more cost effective

from the insurer’s point of view to withhold approval of the request.

As all this suggests that assistive communication devices and communication systems are at

a disadvantage in the reimbursement process because unlike the electrolarynx and certain other

forms of medical equipment—they are recently

introduced technologies. Not all health care tech-

● A1so, third-party payers are understandably concerned about

the cost of processing claims.
Ch. 4–Information and Funding for the Speech-Impaired ● 41

nologies of recent origin, however, are similarly

disadvantaged. Thus, the explanation cannot lie

in novelty alone. What other factors are at work?

One of these, surely, is that these technologies

are not only new, but also very different from

predecessor technologies in terms of the patient

population they serve. Third-party payers are far

more accustomed to reimbursing claims submitted

in connection with acute episodic bouts of illness

(and with illness requiring surgery in particular)

than they are to honoring those for remediating

a condition in a person who is disabled, but not

necessarily sick. The distinction is pertinent because it means that providers cannot easily submit bills for rehabilitation services and technologies—as they sometimes can with technologies associated with acute illness—in the guise of their

being for practices and equipment traditionally

reimbursed.

Probably more important is that assistive communication devices and systems are unfamiliar or

unknown to most physicians. Rehabilitation medicine is, in general, a neglected topic both in undergraduate and graduate medical education

where the thrust is more towards specialties and

subspecialties dealing with the application of discrete technologies to particular organ systems than

toward improving overall patient functioning.

Very little course time is devoted to multiple physical disabilities and to multiple physical disabilities

in conjunction with speech impairment, even for

recently trained pediatricians and neurologists

whose educational philosophies acknowledge the

importance of the development of language and

speech (12).

Moreover, physicians in the field of rehabilitation medicine, and thus likely to be aware of augmentative communication technology, are relatively few and not especially prestigious in the

eyes of practitioners in more mainstream specialties such as surgery, internal medicine, family

practice, pediatrics, etc. Rehabilitation specialists

thus do not have a great deal of influence on their

colleagues in other fields.

These factors together have also conspired to

give assistive communication technology little

visibility in the medical literature. The publications with the widest physician readership such

as The Journal of the American Medical Association, The New England Journal of Medicine, and

others, rarely, if ever, deal with this subject matter. Nor does their advertising. Thus, there is

almost nothing in the professional environment

of most physicians that would bring their attention to these issues. Since they have also received

little attention from the lay media, there is little

impetus for change from that direction either.

The reimbursement of assistive communication

devices and systems is further complicated by the

role, somewhat down the health care hierarchy,

of speech-language pathologists. Though they

have knowledge and skills that are of special value

to communicatively impaired people, they have

struggled for recognition as professionals and

against the threat of their functions being usurped

by physicians.

Many physicians remain suspicious of speechlanguage pathologists if for no other reason than

that they are generally trained by the faculties of

schools of the arts and sciences, rather than by

the faculties of medical schools. From the perspective of the physician, this makes them appear less

rigorously trained and, therefore, less than full

health professionals—an attitude that is reinforced

by the insistence of third-party payers that only

claims based on physician prescriptions will be

considered for reimbursement.

Moreover, although the American Speech-Language Hearing Association (ASHA) never took

such a position officially, some practitioners in

the field were long influenced by the dogma that

all nonvocal clients (except those whose loss of

speech ensued from removal of the larynx for cancer) should learn to speak unassisted and that, accordingly, assistive communication aids were a

passing fad. This, too, has tended to discourage

coverage of these technologies by third-party payers (51).

There are clear signs that this philosophy is becoming outmoded. The August 1981 issue of the

ASHA journal, for instance, was almost wholly

devoted to articles that portrayed assistive communication aids in a favorable light. And ASHA

had planned to hold a conference on this subject

in 1982, but was unable to get the requisite funding from the various Federal agencies to which

it applied for support.
42 ● Health Technology Case Study 26: Assistive Devices for Severe Speech Impairments

Nonetheless, just as medical school curricula

neglect this subject matter at both the undergraduate and graduate levels, this has also been true

of many speech-language pathology curricula.

Again, there are some indications of change. A

recent ASHA survey of college and university

speech-language pathology programs found that

almost 95 percent of them offer at least some

course work in augmentative communication and

that half of them offer at least one complete course

(8). Still, there are practicing speech-language

pathologists who got their training before these

curriculum changes were introduced and thus are

almost entirely unfamiliar with assistive communication technologies. And though familiarization

with them may be available in most current

speech-language pathology training programs the

relevant courses are not always required. Moreover, even if required, these courses may devote

only superficial attention to how these technologies are best applied.

In fact, occupational therapists have historically

often been more receptive to assistive communication aids than many speech-language pathologists.

This lack of receptiveness among speech-language

SUMMARY

In principle, the third-party payment system exists to serve the needs of the handicapped, as well

as those of the acutely ill. In reality, it is so fragmented that many of its intended beneficiaries fall

into the cracks. A natural tendency to deny or

delay reimbursement for assistive communication

devices because of their unfamiliarity is intensified

by the reluctance or inability of physicians and

pathologists can have particularly unfortunate

consequences for multiply physically disabled

children whose lack of speech is congenital. This

inability to communicate is often first professionally addressed when they enter school where special education programs more often rely on speech

clinicians than on occupational therapists, who,

instead, tend to be affiliated with medical centers,

or nursing and convalescent facilities.

When speech clinicians who have not been specifically trained to serve this population are, in

effect, the providers, it is not only their possible

ambivalence towards the technology that weakens

its likelihood of reimbursement. It is also that

third-party payers are aware that such clinicians

may or may not be sufficiently competent to prescribe or to counsel a prescribing physician.

Again, this is a disincentive to reimbursement.

Administrators of payment programs who have

reason to question the competence of the prescriber rarely hesitate to deny requests for funding the

prescription, or at least to subject such requests

to a process of scrutiny that can delay implementation for months or years.

relevant allied health professionals to make a persuasive case for them. The failure of such professionals to make this case has fueled arbitrary, inflexible, and often inconsistent behavior on the

part of third-party payers and deters the dissemination of assistive communication technology

and its appropriate utilization.

THE INDUSTRY PERSPECTIVE

Advances in electronics in combination with as the companies in question prospered they

legislation enacted on behalf of handicapped per- would plough some profit back into further resons encouraged several firms to enter the assistive search and development.

communicative aids market by commercializing

products developed in research, during the mid In fact, the expected fit has hardly materialized.

to late 1970’s. There appeared to be a good fit be- The top seller in the field is the Canon Commutween the needs of a user population and those nicator, a portable tape typewriter marketed by

of industry. It was, therefore, to be expected that Telesensory Systems, Inc., of Palo Alto, Calif.,
Ch. 4—information and Funding for the Speech-Impaired ● 43

which is small enough to be easily carried. Yet

Telesensory Systems has been able to sell only

about 1,500 of these units since it introduced them

in 1977, and its continuing to market them has

been at the expense of diminished profits from its

other product lines. Meanwhile, the runner-up device—the HandiVoice marketed by Phonic Ear,

Inc., in Mill Valley, Calif.–has done only half

as well in approximately the same length of time.

Although no precise figures are available for the

market as a whole, since they are proprietary information, it is evident that sales volumes for the

entire industry have been low.

A corollary is that very few of the estimated

75,000 to 1.5 million severely disabled nonvocal

persons have had access to these devices, because,

at $500 or more each, the devices are beyond most

persons’ means. An educated guess is that no more

than 3,500 to 6,000 nonvocal severely disabled

persons have been served by such equipment to

date.

The reluctance of third-party payers to reimburse for these technologies is the main reason

they are little used. The reluctance has, if anything, grown as public sector programs have had

less money to spend and have tended to give expenditures for capital equipment the lowest priority—despite the likelihood that the investment

would often permit less client dependency and,

therefore, lower taxpayer expense.

In addition, even those applications that have

ultimately been approved for funding have often

generated lower than expected revenues for manufacturers and distributors because:

1.

2.

3.

In

the firms have had to devote time and effort to helping educators, health care providers, and their clients try to get third-party

payers to agree to the purchase;

there have often been delays of months to

a year or more in reimbursement, and

some third-party payers—not only Medicaid

agencies—have made it their policy to base

reimbursement on only a partial percentage

(typically 85 percent) of the listed retail cost

of the device.

many States, these agencies have also made

it a condition of reimbursement that the manufacturer or distributor not seek additional money

from the person who is to receive the equipment

or from his immediate family. At least two firms

have therefore stopped doing business with agencies that impose these demands.

Faced with such economic disincentives, private

industry involvement in augmentative communication for the severely disabled nonvocal is necessarily restricted. Thus, this industry may well

have to put reducing costs ahead of innovation

and product betterment if it is to survive at all.

The microprocessor and the semiconductor have

made state-of-the-art electronic devices for the disabled ready for commercialization. But in the absence of the volume of business anticipated from

third-party payments, these technologies are hostages to risk factors that some quarters in industry

feel powerless to overcome.

To be sure, this is not always the case. In the

fall of 1982, for instance, the Texas Instruments

Corp. introduced its Vocaid, which is now being

sold to school districts, hospitals, nursing homes,

and rehabilitation centers. This is a digitalized artificial voice output communication aid designed

primarily for people with temporary or short-term

speech loss and sufficient motor control to use its

touch-sensitive surface which is divided into 36

squares and comes with a set of overlays that give

it a fairly extensive, but not unlimited, repertoire

of words and phrases.

However, the device—which sells for about

$150—is a spinoff from an earlier Texas Instruments product (the Touch and Tell educational

toy for young children). Thus, it might well have

never been modified and commercialized had

Texas Instruments not already had a running start

on this technology.

Similarly, the Apple Computer Corp. has published a resource guide on using computers for the

disabled and publicized applications of its products to the communications needs of nonvocal severely physically disabled persons in its magazine

(1,18,22). And the Radio Shack Division of the

Tandy Corp. has helped to underwrite a contest,

sponsored by the National Science Foundation,

to make personal computers more accessible and

more useful to people with a variety of handicaps.
44 ● Health Technology Case Study 26: Assistive Devices for Severe Speech Impairments

But neither company has taken steps to go beyond

such honest broker roles, apparently because the

characteristics of the potential market do not merit

industry’s direct entry into producing or distributing products specially designed to compensate

for communication disabilities.

Meanwhile, those companies that have marketed specialized assistive communication aids

have been disadvantaged by the disincentives to

third-party payment already discussed. Other discouraging factors from the perspective of industry

include the following (36,51):

●

●

●

●

High research and development costs for new

technical aids or for substantive redesign or

modification of existing aids. Such research

and development is expensive, because human factor studies are required to adapt

equipment operation to the physical limitations of the handicapped, about which little

is known to begin with.

Few nonvocal severely handicapped persons

with sufficient education and technical expertise to participate in research and development as professionals and so help industry

avoid costly design mistakes.

Restrictions in some government programs

supporting rehabilitation research that make

profitmaking firms ineligible for grants and

contracts. Some manufacturers complain that

this results in developing prototypes in university settings in a manner that fails to take

production factors into account, thus making the transfer to commercialization needlessly costly and difficult. However, the

Small Business Innovative Research Program

that has come into being during the Reagan

administration may go a long way towards

solving this problem. Already, for example,

the National Institutes of Health have

awarded grants and contracts, 16 relevant to

assistive communications, to small businesses

under this program.

Very high marketing costs associated with

reaching the small, diverse, and geographically dispersed population of prospective

assistive communication aids users, a problem compounded because speech professionals, special education professionals, physicians, and others involved directly in health

care delivery often have little or no knowledge of or training in this field.

A population of prospective users that is

hard to identify because its members are usually classified according to another disabling condition, the manifestations of which

sometimes do and sometimes do not include

an inability to talk. For example, only a

minority of persons with cerebral palsy are

totally nonvocal. Similarly, not all those

with traumatic head injuries lose their speech

either temporarily or permanently.

A population of prospective users that does

not come with a-readymade advocacy and

service delivery infrastructure built around

a shared functional inability to talk. This

population contrasts with that of the blind

who—despite the fact that they are blind because of a variety of pathologies—have been

able to make their common inability to see

the central issue in persuading both public

and private sectors to help meet their needs.

(Of the disabled, note that only the legally

blind are automatically entitled to a Federal

income tax exemption. Similarly, there is a

registry of all agencies and organizations that

serve blind people in the United States, but

no such registry for those who are unable,

for whatever reason, to talk. )

Furthermore, the many groups organized

around given diseases or diagnoses (e.g., multiple sclerosis, amyotrophic lateral sclerosis, cerebral palsy, etc. ) tend to share very little information about the communication disabilities found

in their constituencies and tend not to place issues

related to communication at the forefront of their

concerns. Perhaps this orientation results from the

understandable emphasis of these groups on medical research aimed at the improved therapy, cure,

and prevention of the disease in question, rather

than on improving the lot of those faced with

irreversible impairments resulting from its

pathology.

In sum, while advocacy groups are beginning

to form around the functional inability to communicate, these groups are still poorly financed

and weak. It maybe that the same forces that fo-
Ch. 4–Information and Funding for the Speech-Impaired ● 45

cused public attention on orphan drugs—drugs ious physical limitations like those with which this

needed by too few patients to make their devel- case study is concerned (36). But for the time beopment and manufacture by pharmaceutical firms ing, at least, these forces have yet to emerge or

sufficiently profitable—will eventually come to coalesce.

the rescue of orphan devices for people with ser-

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U . S . GOVERNMENT PRINTING OFFICE : 1984 () - 98-819