International Review of Research in Mental Retardation, Volume 24 (International Review of Research in Mental Retardation)

International Review of RESEARCH IN MENTAL RETARDATION VOLUME 24

Board of Associate Editors Philip Davidson UNIVERSITY OF ROCHESTER MEDICAL CENTER

Michael Guralnick UNIVERSITY OF WASHINGTON

Linda Hickson COLUMBIA UNIVERSITY

Rathe Karrer UNIVERSITY OF KANSAS MEDICAL CENTER

William McIlvane E. K. SHRIVER CENTER

Glynis Murphy UNIVERSITY OF KENT AT CANTERBURY

Ted Nettelbeck UNIVERSITY OF ADELAIDE

Jean-Louis Paour « AIX-EN-PROVENCE UNIVERSIT E« DE PROVENCE A

Marsha M. Seltzer UNIVERSITY OF WISCONSIN

Jan Wallander CIVITAN INTERNATIONAL RESEARCH CENTER

International Review of RESEARCH IN MENTAL RETARDATION

EDITED BY

LARAINE MASTERS GLIDDEN DEPARTMENT OF PSYCHOLOGY ST. MARYÕSCOLLEGE OF MARYLAND ST. MARYÕSCITY, MARYLAND

VOLUME 24

San Diego San Francisco New York Boston London Sydney Tokyo

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2 1

Contents

Contributors . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

ix

Preface . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

xi

Self-Determination and Mental Retardation Michael L. Wehmeyer I. II. III. IV. V.

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Overview of Self-Determination . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Research in Mental Retardation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Models of Self-Determination and Mental Retardation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Research Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

1 3 11 23 38 41

International Quality of Life: Current Conceptual, Measurement, and Implementation Issues Kenneth D. Keith I. II. III. IV. V.

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Conceptualizing Quality of Life . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Measuring Quality of Life . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Applying the Quality of Life Concept . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

49 50 55 64 66 67

Measuring Quality of Life and Quality of Services through Personal Outcome Measures: Implications for Public Policy James Gardner, Deborah T. Carran, and Sylvia Nudler I. Introduction and History of the Council . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . II. Toward a ÒPerson-by-PersonÓApproach . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . v

75 76

vi III. IV. V. VI. VII.

CONTENTS

A Social Context for Quality and Outcomes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . The Importance of Personal Outcomes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Method . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Results . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Discussion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

77 78 80 83 97 99

Credulity and Gullibility in People with Developmental Disorders: A Framework for Future Research Stephen Greenspan, Gail Loughlin, and Rhonda S. Black I. II. III. IV. V.

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . A Proposed Model For Explaining Gullible Behavior . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Real-World Manifestations of Credulity and Gullibility . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Locating Gullibility and Credulity in a Larger Scholarly Literature . . . . . . . . . . . . . . . . . . . . Gullibility and Disability . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

101 104 111 119 129 132

Criminal Victimization of Persons with Mental Retardation: The Influence of Interpersonal Competence on Risk T. Nettelbeck and C. Wilson I. II. III. IV. V. VI.

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Theories of Victimization . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . An Application of SparksÕs Theory . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Intervention . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Implications of Heightened Risk . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Summary and Conclusions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

137 142 152 155 161 163 164

The Parent with Mental Retardation Steve Holburn, Tiffany Perkins, and Peter Vietze I. II. III. IV. V. VI.

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Historical Trends and Treatment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Demographic Trends . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Parenting Adequacy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Research Limitations and Suggestions for Future Research . . . . . . . . . . . . . . . . . . . . . . . . . . . Conclusions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

171 173 177 184 199 201 204

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Psychiatric Disorders in Adults with Mental Retardation Steve Moss I. II. III. IV. V. VI. VII. VIII. IX.

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . DeÞning Mental Health Problems . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Prevalence of Mental Health Problems . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . The Pathway to Mental Healthcare . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Diagnosis of Mental Health Problems . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Treatment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Service Organization . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Training . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Conclusions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

211 212 215 220 222 230 233 234 234 235

Development and Evaluation of Innovative Residential Services for People with Severe Intellectual Disability and Serious Challenging Behavior Jim Mansell, Peter McGill, and Eric Emerson I. II. III. IV. V.

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Providing High-Quality Services in the Community. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Achieving a Better Quality of Life . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Individual Illustrations of Placement Success and Failure . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Summary and Conclusions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

245 249 258 272 283 292

The Mysterious Myth of Attention Deficits and Other Defect Stories: Contemporary Issues in the Developmental Approach to Mental Retardation Jacob A. Burack, David W. Evans, Cheryl Klaiman, and Grace Iarocci I. The Myth of Attentional Problems: An Example of the Defect Approach . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . II. Origins of the Developmental Approach . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . III. Expanding the Study of Mental Retardation to Include Persons with Organic Etiology . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . IV. Methodological Strategies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . V. Issues of Developmental Levels of the Participants . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . VI. Summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

300 303 305 309 313 316 317

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Guiding Visual Attention in Individuals with Mental Retardation Richard W. Serna and Michael T. Carlin I. II. III. IV.

Discrimination Learning . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Guidance of Initial Observing Responses . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Guiding Observing Responses: Matching-to-Sample Training . . . . . . . . . . . . . . . . . . . . . . . . Summary and Conclusions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

322 336 345 350 352

Index . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

359

Contributors

Numbers in parentheses indicate the pages on which the authorsÕcontributions begin.

Rhonda S. Black (101), University of Hawaii at Manoa, Honolulu, Hawaii 96822 Jacob A. Burack (299), McGill University, Montreal, Quebec, Canada Michael T. Carlin (321), Shriver Center, University of Massachusetts Medical School, Waltham, Massachusetts 02452 Deborah T. Carran (75), Johns Hopkins University, Baltimore, Maryland 21218-2680 Eric Emerson (245), Institute for Health Research, University of Lancaster, Lancaster, United Kingdom David W. Evans (299), Bucknell University, Lewisburg, Pennsylvania 17837 James Gardner (75), The Council on Quality and Leadership, Towson, Maryland 21204 Stephen Greenspan (101), Health Sciences Center, University of Colorado, Denver, Colorado 80217-3364 Steve Holburn (171), The New York State Institute for Basic Research in Developmental Disabilities, Staten Island, New York 10314 Grace Iarocci (299), McGill University, Montreal, Quebec, Canada Kenneth D. Keith (49), Department of Psychology, University of San Diego, San Diego, California 92110-2492 Cheryl Klaiman (299), McGill University, Montreal, Quebec, Canada Gail Loughlin (101), University of Connecticut, Storrs-MansÞeld, Connecticut 06269 Jim Mansell (245), Tizard Centre, University of Kent at Canterbury, Kent, United Kingdom ix

x

CONTRIBUTORS

Peter McGill (245), Tizard Centre, University of Kent at Canterbury, Kent, United Kingdom Steve Moss (211), Institute of Psychiatry, KingÕs College London, London SE5 8AF, United Kingdom T. Nettelbeck (137), Department of Psychology, University of Adelaide, Adelaide, South Australia Sylvia Nudler (75), The Council on Quality and Leadership, Towson, Maryland 21204 Tiffany Perkins (171), The Graduate School and University Center of the City University of New York, and the New York State Institute for Basic Research in Developmental Disabilities, Staten, Island, New York 10314 Richard W. Serna (321), Shriver Center, University of Massachusetts Medical School, Waltham, Massachusetts 02452 Peter Vietze (171), The New York State Institute for Basic Research in Developmental Disabilities, Staten, Island, New York 10314 Michael L. Wehmeyer (1), Beach Center on Families and Disability, Schiefelbusch Institute on Life Span Studies, The University of Kansas, Lawrence, Kansas 66045 C. Wilson (137), Department of Psychology, University of Adelaide, Adelaide, South Australia

Preface

This current volume of the Review is eclectic, as have been almost all the volumes that precede it. Despite its breadth, however, there are a few themes that thread their way through several chapters connecting them by explicating issues that are common to their topics. The Þrst eight chapters demonstrate this interconnection. In each of them, the authors focus on adults with mental retardation. By comparison, in Volume 1 of the Review, published in 1966, none of the chapters focused on adults with mental retardation. This change should not be surprising because society has changed, as have the lives of people with mental retardation. Authors are writing about a contemporary Þeld that reßects this society and these lives. Another theme that links these Þrst eight chapters is a concern with the life circumstances of the adults with mental retardation. In Chapter 1, Michael Wehmeyer examines the meaning, models, and research relevant to self-determination in persons with mental retardation. His model of self-determination is comprehensive, incorporating characteristics of the individual and the environment, whereby capacity and opportunity interact with perception and beliefs to yield varying degrees of autonomy, self-regulation, and self-realization. Not surprisingly (at least for Western societies), greater self-determination is related to higher quality of life. Also, not surprisingly, the next two chapters in this volume deal directly with quality of life. In Chapter 2, Ken Keith takes on the Herculean task of reviewing the conceptual and scientiÞc underpinnings of quality of life. Some issues raised are inherent to all research. For example, even the simplest of concepts is fraught with multiple deÞnitions and failures to specify appropriate methods of measurement. In addition to these universal issues, however, the quality-of-life construct as applied to persons with disabilities has some problems that are speciÞc, if not unique, to it. One of them is the informant/proxy problem: When the person with mental retardation is unable to respond on his or her own behalf, a surrogate responds instead. Keith appropriately concludes that this issue is an important one and requires more research. Quality of life is also the primary focus of Chapter 3, coauthored by James Gardner, Deborah Carran, and Sylvia Nudler. Using analyses of a large data set, they were able to demonstrate that, whereas health and safety issues seemed independent of where people lived and which organization funded the residence, xi

xii

PREFACE

psychological characteristics such as identity, autonomy, afÞliation, and attainment were inßuenced by the environmental variables. Larger and more restrictive settings were associated with fewer outcomes relating to these psychological variables. Clearly, these Þndings have implications for public policy. The authors are cautious in pointing out the limitations of their current data, but certainly, their results should be an impetus for replication across other settings. Without doubt, the interaction of the person with the environment inßuences quality of life. One important person characteristic is the ability to assess the degree to which others in the environment are fair in their treatment, having help rather than mischief in mind. In their innovative chapter, Greenspan, Loughlin, and Black posit that people with developmental disabilities are likely to be more credulous and gullible than those without disabilities. They propose a multidimensional model in which personal competence factors mediate between environmental factors and social outcomes. This chapter and the proposed model are likely to be heuristic. Currently, the research on this topic is scanty. I predict that it will not be that way for long. In a less than perfect world, gullibility and credulity make victimization more probable. In Chapter 5, Ted Nettelbeck and C. Wilson spotlight criminal victimization with attention to prevalence, theories of victimization, and types of intervention that might reduce it. They conclude that persons with mental retardation are especially at risk for crimes against the person and examine what behaviors of the victim contribute to this higher risk. Interestingly, within the mental retardation range of functioning, it is interpersonal incompetence rather than lower intellectual functioning that seems to lead to greater victimization. Models of quality of life generally include choice, and one life choice for most adults is that of parenting. When the adult has mental retardation, however, there are societal values that question the wisdom of that choice. In Chapter 6, Holburn, Perkins, and Vietze review the research on parents with mental retardation. They conclude that although the research is plagued with methodological problems, some cautious conclusions are possible. Persons with mental retardation display a wide range of parenting skills; nonetheless, they almost always need extensive external supports in order to be adequate caregivers for their children. In this domain, perhaps more than any other, the quality of life of the adult with mental retardation must be counterbalanced with the welfare of the child that he or she is rearing. Adults with mental retardation sometimes have other disabilities that are critical to the kinds of lives they lead. In Chapter 7, Steve Moss summarizes what we know about adults with mental retardation who also have psychiatric disorders. Accurate diagnosis and treatment of these disorders is essential for the enhancement of the quality of life of the individuals themselves as well as those who are part of their community. Moss concludes that although considerable progress has been made

PREFACE

xiii

in case identiÞcation and diagnosis since the mid-1980s, we can claim many fewer advances in treatment and treatment evaluation. He cautions particularly about the need to consider the likelihood of treatment efÞcacy and level of intellectual functioning. The mental health behaviors and needs of those with severe and profound mental retardation are considerably different from those with higher levels of functioning. It is this population with severe intellectual disability as well as serious challenging behavior that is the focus for Jim Mansell, Peter McGill, and Eric Emerson. This population is especially difÞcult to serve in the community, and they frequently remain in institutional placement long after others leave. The project case study described in Chapter 8 provides a demonstration of both the successes that are possible as well as the difÞculties that will inevitably occur as programs deal with cost reduction, integration of specialist and generic services, reliance on longterm institutionalization as public policy, and other issues that are endemic to the context. The authors are wise in their reminder that from both a service delivery and research perspective, attention must be given not only to the characteristics of clients but also to the organizations serving these clients. In the Þnal two chapters, the eclectic nature of this volume reasserts itself. The coauthors of both chapters turn their attention to attention. In Chapter 9, Burack, Evans, Klaiman, and Iarocci challenge the view that there is an attentional deÞcit in persons with mental retardation. On the basis of their review of an approximately 40-year literature, they conclude that the empirical evidence does not support an overarching relation between attention deÞcit and mental retardation when appropriate comparisons are made among individuals functioning at the same general mental age level. Their conclusion, however, does not obviate that some speciÞc etiology groups may exhibit attention deÞcits, and they encourage etiology-focused research to address this issue. Finally, Richard Serna and Mike Carlin address attention quite differently, although they share some references with Burack et al. In their chapter, they are not concerned with whether stimulus discrimination problems in individuals with severe mental retardation are a reßection of a speciÞc deÞcit or part of an overall low level of intellectual functioning. Regardless, understanding why it occurs has important beneÞts for both theory and intervention. They review and summarize past research as well as describe their own ongoing program and conclude the following: With a variety of visual tasks, performance is modiÞable, and improving both observing and attending behaviors also improves performance on the task. As always, the breadth of expertise exempliÞed in a volume of the International Review is enormous. I rely on a multitude of others for that expertise. In addition to the Board of Associate Editors, especially Linda Hickson, Bill McIlvane, and Glynis Murphy, who were especially helpful in both soliciting and reviewing manuscripts for this volume, there were many other dedicated colleagues who

xiv

PREFACE

served willingly and ably as reviewers. SpeciÞcally, Ivan Brown, Tony Charman, Bob Cummins, Maurice Feldman, Eileen Furey, Stephen Greenspan, Bob Hodapp, Pat Howlin, John Jacobson, Janey McMillen, Chris Oliver, Rebecca Renwick, and Bob Schalock provided thoughtful and timely comments. Without their service, this volume, and the Þeld in general, would suffer. LARAINE MASTERS GLIDDEN

Self-Determination and Mental Retardation MICHAEL L. WEHMEYER BEACH CENTER ON FAMILIES AND DISABILITY SCHIEFELBUSCH INSTITUTE ON LIFE SPAN STUDIES THE UNIVERSITY OF KANSAS LAWRENCE, KANSAS

I.

INTRODUCTION

Self-determination is a construct with its historical roots in philosophy and the age-old debate concerning human determinism. Its meaning is draped in political calls for self-governance and independence, and its understanding is linked with issues of personal efÞcacy, human agency, and motivation. Since the perception of people with mental retardation as competent, able, and worthy of respect and dignity is a relatively recent occurrence, it is not surprising that discussions about self-determination have, by and large, excluded consideration of its application to people with mental retardation. In the past 2 decades, however, self-determination has become an important construct in disability services and advocacy circles, primarily in education and adult services. While the latter has focused on selfdetermination in a ÒcollectiveÓ sense (the rights of people or peoples to selfgovernance), efforts in special education have focused on the individual or personal use of the construct reßecting the historical debate in psychology concerning determinants of human behavior. As the construct has been applied to people with disabilities, including people with mental retardation, several models of self-determination as a personal construct have emerged within the disability literature. The purpose of this chapter is to introduce readers to the construct; overview research upon which conceptualizations of self-determination within mental retardation have been based, including research in personality, cognitive, developmental, social, experimental, and community psychology; describe the theoretical models themselves; and provide direction for future research. The term Òself-determinationÓhas two primary meanings, both which have a long history of use outside the disability Þeld. The American Heritage Dictionary INTERNATIONAL REVIEW OF RESEARCH IN MENTAL RETARDATION, Vol. 24 0074-7750/01 $35.00

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C 2001 by Academic Press. Copyright  All rights of reproduction in any form reserved.

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of the English Language (1992) identiÞes self-determination as a noun and deÞnes it as: 1. Determination of oneÕs own fate or course of action without compulsion. 2. Freedom of the people of a given area to determine their own political status; independence. Both meanings are roughly synonymous with the term self-governing, an adjective that means (1) exercising control or rule over oneself or itself or (2) having the right or power of self-government (The American Heritage Dictionary of the English Language, 1992). The Þrst meaning of the construct is one of a personal self-determinationÑcontrolling oneÕs life and oneÕs fate. The second meaning refers to a national, political or collective self-determination, the right of a nation or a group of people to self-governance. A.

National, Political, or Collective Self-Determination

The national or political sense of the term seems to be Þrst widely used, or at least within American circles, during Woodrow WilsonÕs second presidential term. In 1918, as World War I drew to a close, Wilson formulated 14 points that would offer self-determination (as self-government) to the European nations involved in the war and pave the way for general disarmament. This usage remains the most common application of the term, primarily within the Þeld of political science. Although most frequently used to refer to the right of a nation or country to self-governance, the term has equal applicability to people whose group identity is deÞned by criteria other than geographic boundaries, including people self-identiÞed by cultural or racial characteristics (e.g., Native American selfdetermination), sexual orientation, gender, or disability status. Vaughan (1993), for example, refers to the Òstruggleof blind people for self-determinationÓ(p. i). In recent years there have been a number of efforts to implement systemic changes within adult-service delivery systems serving people with mental retardation or developmental disabilities that utilize strategies such as person-centered planning, vouchers, individual budgeting, and so forth to enable the recipients of these services to have greater control over the types and intensity of supports available to them (Nerney & Shumway, 1996). These efforts take as their starting point the right of people with mental retardation to self-determine their lives and the use of the construct within these efforts refers to this political or collective sense of the term. B.

Personal Self-Determination

The second use of the term, that of a personal construct, emerged in the early 1940s along with the development of the Þeld of personality psychology, although related debates around ÒdeterminismÓ(discussed subsequently) have been around

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for centuries. It is on this personal sense of the construct that the remainder of this chapter focuses, so a more thorough review of these issues follows in the next section. However, it is worth noting from the onset that there is often confusion associated with the term ÒdeterminationÓas it pertains to the construct self-determination. The noun ÒdeterminationÓhas multiple meanings, including (1) the act of making or arriving at a decision or the decision reached (e.g., the choice of a foster home was left to the court to determine) and (2) Þrmness of purpose or resolve (e.g., he was determined to succeed) (The American Heritage Dictionary of the English Language, 1992). The personal form of self-determination (e.g., determination of oneÕs own fate or course of action without compulsion) is not just adding the Òself-Óreferent to the Þrst meaning of determination, thus referring only to a decision one made. Nor is it synonymous with the second deÞnition (Þrmness of purpose or resolve), despite the tendency of many people to use self-determination in this manner. In fact, the meaning of ÒdeterminationÓin self-determination is synonymous with Òdeterminant,ÓdeÞned as Òan event or antecedent condition that in some way causes an eventÓ(Wolman, 1973, p. 97).

II.

OVERVIEW OF SELF-DETERMINATION

Theories of personal self-determination are, in essence, theories of how or why people become self-governing and exert control over their lives. With a few exceptions, the bulk of the theoretical work in this area has not used the term selfdetermination, per se, but instead focused on components that contribute to selfdetermination, including human control and causality, self-efÞcacy and outcome expectations, self-regulation, achievement, effectance and mastery motivation, interpersonal problem solving, goal setting and attainment, and so forth. The theories that explain and predict human behavior in these diverse areas include personality and motivation theories and theories of learning and cognition and have emerged from numerous disciplines. The remainder of this section examines historical understandings of self-determination, issues in deÞning the construct, and its link with disability. Subsequent sections examine research on self-determination and mental retardation and overview prevailing models of self-determination. The chapter closes with directions for research. A.

Historical Understandings of Self-Determination

1. DETERMINISM AND SELF-DETERMINATION As discussed previously, the construct ÒdeterminismÓrefers to the doctrine that all phenomena, including human behavior, are effects of preceding causes (Wolman, 1973). Determinants of human behavior (e.g., causes of human behavior)

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include physiological, structural, environmental, and/or organismic factors. In psychology and in education, the degree to which those determinants are external versus internal has been the basis for much contention. In fact, suggesting that self-determination has its roots in debates about determinism may seem contradictory. One dictionary deÞnition of self-determination is Òfreewill,Óyet the classic debate in psychology has pitted determinism against free will, as best exempliÞed, perhaps, by B. F. SkinnerÕs text Beyond Freedom and Dignity (1971). However, Bandura (1997) noted that in discussions of human agency, referents to the term ÒdeterminismÓimply the Òproductionof effects by events, rather than the doctrinal sense meaning that actions are completely determined by a prior sequence of causes independent of the individualÓ(p. 7). Bandura expanded on this, stating: Freedom is often considered antithetical to determinism. When viewed from a sociocognitive perspective, there is no incompatibility between freedom and determinism. Freedom is not conceived negatively as exemption from social inßuences or situational constraints. Rather it is deÞned positively as the exercise of self-inßuence to bring about desired results. This agentic causation relies heavily on cognitive self-regulation. (p. 7)

As the Þeld of personality psychology emerged in the 1930s, this distinction became the focal point for examination, as discussed in the following section. 2. PERSONALITY PSYCHOLOGY, INDIVIDUAL DIFFERENCES, AND SELF-DETERMINATION The earliest conceptualizations of self-determination within the personality literature used the term as it related to the determination of oneÕs own fate or course of action without compulsion. For example, in his early text titled Foundations for a Science of Personality, Angyal (1941) proposed that an essential feature of a living organism is its autonomy, where autonomous means self-governing or governed from inside. According to Angyal, an organism Òlives in a world in which things happen according to laws which are heteronomous (e.g., governed from outside) from the point of view of the organismÓ(p. 33). Angyal stated that Òorganisms are subjected to the laws of the physical world, as is any other object of nature, with the exception that it can oppose self-determination to external determinationÓ(p. 33). Angyal suggested that the important task for developing a science of personality was the identiÞcation of principle(s) of the biological total processÑthe movement of organisms from undifferentiated parts to an organized whole. He deÞned the Òbiologicaltotal processÓas a trend toward autonomy and argued that the science of personality is, in essence, the study of two essential components or determinants to behavior, autonomous determination (or self-determination), and heteronomous determination (other-determined). He noted that Òinthe realm of Ôorganismic happeningsÕwe Þnd neither entirely autonomous nor entirely heteronomous determinantsÓ(p. 21) and suggested a psychology of individual differences by noting that, within nature, there are marked variations in the importance and balance

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of autonomous and heteronomous determinants to behavior. Nonetheless, Angyal places primary importance for laying the foundation for a science of personality in the fact that a central process of an organism is the movement toward autonomous determination. He showed this by stating: It would probably be generally agreed that without autonomy, without self-government, the life process could not be understood. Selection, choice, self-regulation, adaptation, regeneration are phenomena which logically imply the autonomy of the organism. Selection, that is the search for certain environmental conditions, is only possible in a being capable of self-directed activity. (p. 34)

It is worth noting another corollary of AngyalÕs thesis of the centrality of selfdetermination to personality study; that is, behavior is neither exclusively internally nor externally determined. He noted: the autonomy of the organism is not an absolute one. Self-determination is restricted by outside inßuences which, with respect to the organism, are heteronomous. The organism lives in a world in which processes go on independent of it. The organism asserts itself against the heteronomous surroundings. (p. 38)

3. MOTIVATION AND SELF-DETERMINATION One theoretical perspective that addressed self-determination speciÞcally is the work of Deci and colleagues (Deci & Ryan, 1985), who proposed a theory of intrinsic motivation that incorporates a central role for self-determination. Based largely on WhiteÕs (1959) proposal of an innate, intrinsic energy source, referred to by White as effectance motivation and which was theorized to motivate a wide variety of human behavior, and also building on work by cognitive theorists on personal causation and perceived locus of causality (Heider, 1958; deCharms, 1958), Deci (Deci, 1975; Deci & Ryan, 1985) proposed that intrinsic motivation and self-determination were Ònecessaryconcepts for an organismic theoryÓ[of motivation] (Deci & Ryan, p. 7). In 1975 Deci forwarded a theory to explain empirical Þndings concerning the effects of external events on intrinsic motivation. This theory, called cognitive evaluation theory (Deci, 1975), contained three primary propositions: (1) people have an intrinsic need to be self-determining; (2) people have an intrinsic need to be competent and master optimal challenges; and (3) events relevant to the initiation and regulation of behavior have three aspects (informational, controlling, and amotivating) that are differentially salient to different people (Deci & Ryan, 1985, p. 62). Deci and colleagues (Deci & Ryan, 1985) later expanded their original conceptualization and this expanded theory is referred to as self-determination theory. Brießy, Deci (1992) summarizes self-determination theory as Òdistinguish[ing]between the motivational dynamics underlying activities that people do freely and those that they feel coerced or pressured to do. To be self-determining means to engage in an activity with a full sense of wanting, choosing, and personal endorsement. When self-determined, people are acting in

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accord with, or expressing, themselvesÓ(p. 44). Within self-determination theory, Deci and Ryan deÞne self-determination as: the capacity to choose and to have those choices, rather than reinforcement contingencies, drives, or any other forces or pressures, to be the determinants of oneÕs actions. But self-determination is more than a capacity, it is also a need [italics added]. We have posited a basic, innate propensity to be self-determining that leads organisms to engage in interesting behaviors. (p. 38)

DeciÕs research focused attention on the importance of student motivation and interest in learning, although a primary purpose of that research was to examine the putative detrimental effects of external rewards on motivation (Deci, 1975; Deci & Ryan, 1985). This line of research has provided strategies to increase student motivation in the classroom for students with and without disabilities (Deci & Chandler, 1986; Deci, Hodges, Pierson, & Tomassone, 1992) and has contributed to an understanding of the impact of teacher control orientation on student motivation and performance (Boggiano & Katz, 1991; Deci, Spiegel, Ryan, Koestner, & Kauffman, 1982; Flink, Boggiano, & Barrett, 1990). B.

Issues in Defining Self-Determination

One step in the theory development process is the production of both constitutive deÞnitions (e.g., deÞning a construct with other constructs) and operational deÞnitions (e.g, assigning meaning to a construct or variable by specifying the operations necessary to measure it). Given this, ÒdeÞningÓself-determination is a function of and contextually related to the theory development process and, as such, speciÞc deÞnitions will be left to discussion within the context of the four theoretical perspectives presented subsequently. However, there are some overall issues in deÞning self-determination that warrant consideration. Self-determination has been deÞned in a number of ways in the disability literature, particularly (a) as a basic human right, (b) as a speciÞc response class, and (c) as based on functional properties of the response class. DeÞning self-determination as a basic human right is largely associated with the political or collective sense of the term and not dealt with in the context of this chapter. DeÞning a construct as a speciÞc response class means to deÞne it by a set of behaviors, and this has been the dominant means of deÞning the construct in relation to disability. Many instructional activities ÒdeÞneÓself-determination based on a description of how Òself-determinedÓ people act, and this may or may not be sufÞcient depending on the scope and intent of the activity. That is, deÞning self-determination as making decisions and choices may be adequate if the instructional materials are designed only to teach decision-making and choice-making. However, when one more closely considers deÞnitions based on a response class, the difÞculty of this approach to deÞning self-determination becomes readily apparent. It is well and good to say that people who are self-determined set goals for themselves, make decisions, speak up for

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their rights and so forth, since many times that is an apt description of the behavior of someone who is self-determined. However, if self-determination means assuming control over oneÕs life and destiny, then virtually any behavior could be an attempt to exert control. The fact that some challenging behaviors exhibited by people with signiÞcant disabilities have a communicative intent illustrate at least one example where behaviors not typically listed in response-class deÞnitions are, seemingly, attempts to take greater control over oneÕs life. The obvious drawback to such an approach is that a deÞnition of self-determination based on a response class or a speciÞc set of behaviors would, by necessity, need to expand to include virtually any behavior. A second problem with deÞning self-determination as a response class is that such a listing of behaviors must include both the occurrence and nonoccurrence of a given behavior or action. For example, there are times when speaking up and being assertive are the best course of action if one is acting in a way that best achieves oneÕs goals and objectives, while there are other times where it is best to be quiet and acquiescent. Thus, even something as seemingly fundamental as ÒbeingassertiveÓcannot really capture the sense of taking control over oneÕs life inherent in the term self-determination. Two other issues are problematic when deÞning self-determination as a response class. First, such activities are tautologicalÑwe know someone is self-determined because he or she does the things by which we deÞne the construct (e.g., sets goals and makes decisions). Second, deÞning self-determination as a response class ignores cross-cultural differences in what is or is not socially valued and acceptable. While being assertive may be a way to exert control in one culture, in another culture it might just be disrespectful and inappropriate. The alternative to deÞning self-determination as a response class is to deÞne it based on the function of the speciÞc response-classÑthat is, based on the function (purpose) of the behavior. People are self-determined based not on what they do, but on the purpose or function of their action (to take control over their lives, live the way they want, etc.). Other constructs within psychology and the social sciences rely largely on functional deÞnitions and, indeed, one deÞnition of mental retardation itself has moved to a more functional approach (Luckasson et al., 1992). There have been a number of misinterpretations of self-determination within the Þeld of mental retardation that contribute to confusion in deÞning the construct. One such misinterpretation is that self-determination is identical to the independent performance of behaviors or, more simply, just means doing things for yourself. When self-determination is interpreted strictly to mean Òdoingit yourself,Óthere is an obvious problem for people with mental retardation, many of whom may have limits to the number and types of activities they can perform independently. However, the capacity to perform speciÞc functions is secondary in importance in becoming self-determined to whether one has control over the outcomes such functions are implemented to achieve. Control is deÞned as Òexercising authoritative

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or dominating inßuence overÓ(American Heritage Dictionary, 1992) and is synonymous with the verb ÒdirectÓ,meaning ÒtomanageÓ.[For deÞnitional purposes, however, the term ÒcontrolÓis preferable to either ÒdirectÓor ÒmanageÓ(e.g., selfdetermination is directing oneÕs life) because ÒcontrolÓis also synonymous with ÒpowerÓand retains the emphasis on empowerment inherent in the use of the term within the disability community discussed subsequently]. Self-determination is not just the independent performance of behaviors. People who have signiÞcant physical disabilities can employ a personal assistant to perform routine activities and, if such functions are performed under the control of that person (e.g., person with disability), it is really a moot point whether the person physically performed the activity. Likewise, a person with a signiÞcant cognitive impairment may not be able to ÒindependentlyÓ(e.g., alone and with no support) make a complex decision or solve a difÞcult problem. However, to the extent that supports are provided to enable that person to retain control over the decisionmaking process and to participate to the greatest extent in the decision-making or problem-solving process, he or she can be self-determined. Second, there is a tendency to equate self-determination with only one aspect of its expression, making choices. There are numerous problems with elevating choice as the ultimate value, both in conceptualizing self-determination and structuring efforts to promote self-determination. Making choices is only one aspect of being self-determined, and to take it out of the broader context can be problematic. Ferleger (1994) noted circumstances of: deprivation or denial of services, or violation of rights, of people with mental retardation based on invocation of ÒchoiceÓas a guiding principle. For example, people are denied individual habilitation planning or even a case manager because they are said to have chosen to give up such assistance. People are denied a job or meaningful activity because they are said to choose otherwise. PeopleÕs homes and bedrooms, and daily life choices, are barren and devaluing, all based on what is said to be ÒchoiceÓ.(p. 70)

Ferleger noted that Òsomewriters, perhaps enamored of the philosophical connections between ÔchoiceÕand ÔfreedomÕor perhaps connecting liberation from institutions with some notion of freedom, seem to extol ÔchoiceÕ as a value supreme to othersÓ(p. 69). Referring to the role of choice in service provision, Ferleger stated Òelevation of choice above other elements of normalization inevitably shortchanges the people who we serveÓ(p. 90). C.

Self-Determination and Disability

Among the Þrst, if not the Þrst, use of the term within the disability literature occurred in a chapter by Nirje (1972) in WolfensbergerÕs (1972) now-classic text on the principle of normalization. Nirje (1972) titled his chapter ÒTheRight to Self-DeterminationÓand in the opening paragraph stated:

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One major facet of the normalization principle is to create conditions through which a handicapped person experiences the normal respect to which any human being is entitled. Thus the choices, wishes, desires, and aspirations of a handicapped person have to be taken into consideration as much as possible in actions affecting him. To assert oneself with oneÕs family, friends, neighbors, co-workers, other people, or vis-`a-vis an agency is difÞcult for many persons. It is especially difÞcult for someone who has a disability or is otherwise perceived as devalued. But in the end, even the impaired person has to manage as a distinct individual, and thus has his identity deÞned to himself and to others through the circumstances and conditions of his existence. Thus, the road to self-determination is both difÞcult and all important for a person who is impaired. (p. 177)

NirjeÕs use of the term suggests, at the least, familiarity with the usage of selfdetermination as a personality construct. His use of the term, while still pertaining to the rights of a particular group of people (people with mental retardation), is nonetheless a call for personal self-determination or self-governance. His is a call for a wide range of actions that enable people to control their lives and their destinies, including choice over personal activities, control over education, independence, participation in decisions; information upon which to make decisions and solve problems, and so forth. Nirje clearly articulated the importance of this personal self-determination for all people, not excluding people with mental retardation or other signiÞcant disabilities. Throughout the chapter Nirje equates self-determination with the respect and dignity to which all people are entitled. More so, Nirje recognized that people deÞne themselves, and others deÞne them, by the circumstances and conditions of their existence. This recognition that self-determination is fundamental to attaining respect and dignity and to perceiving oneself as worthy and valued is a major reason people with disabilities have been unequivocal and consistent in their demand for control in their lives. An analysis of NirjeÕs chapter to determine the types of actions, beliefs, and opportunities that describe self-determination reßects the same breadth and scope seen in the literature today. Nirje (1972) identiÞed making choices, asserting oneself, self-management, self-knowledge, decision making, self-advocacy, selfefÞcacy, self-regulation, autonomy, and independence (although often not using those terms) as the salient features of personal self-determination. NirjeÕs chapter appeared in the same book in which Perske (1972) called for the opportunity for people with mental retardation to experience the Òdignityof riskÓ: The world in which we live is not always safe, secure and predictable . . . . Every day that we wake up and live in the hours of that day, there is a possibility of being thrown up against a situation where we may have to risk everything, even our lives. This is the way the real world is. We must work to develop every human resource within us in order to prepare for these days. To deny any person their fair share of risk experiences is to further cripple them for healthy living. (p. 199)

These two important calls to action emphasized the universality of the desire for control in oneÕs life and oneÕs destiny and over decisions and choices that impact oneÕs life and oneÕs quality of life and illustrate the important link in the

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use of the term Òself-determinationÓas it pertains to people with disabilities with empowerment. 1. SELF-DETERMINATION AS EMPOWERMENT Within the context of the disability rights and advocacy movement, the construct as a personal characteristic has been imbued with the empowerment and ÒrightsÓ orientation typically associated with the sense of the term as a national or political construct. Empowerment is a term usually associated with social movements and typically is used, as Rappaport (1981) stated, in reference to actions that Òenhance the possibilities for people to control their livesÓ(p. 15). Individuals with disabilities (Kennedy, 1996; Ward, 1996) have been unequivocal in their understanding of self-determination as a form of empowerment. In a speech at the National Conference on Self-Determination, an event organized in 1989 by the U.S. Department of EducationÕs OfÞce of Special Education Programs (Ward, 1996), Robert Williams (1989) effectively captured this link between self-determination and empowerment, stating: But, without being afforded the right and opportunity to make choices in our lives, we will never obtain full, Þrst class American citizenship. So we do not have to be told what self-determination means. We already know that it is just another word for freedom. We already know that selfdetermination is just another word for describing a life Þlled with rising expectations, dignity, responsibility, and opportunity. That it is just another word for having the chance to live the American Dream. (p. 16)

It is evident from WilliamsÕremarks, and from the comments of other people with disabilities, that for many people in the disability community the use of the term is as a call for the right to personal self-governance; more related, perhaps, to the meaning of the term as the right of a nation to self-governance than as a motivational or personality construct. Like NirjeÕs call from 20 years earlier, however, the use of the term as a ÒrightÓmixes both the meaning of the term as a national or political right and a personal characteristic. D.

Summary

Self-determination has a rich history as a personal construct. Its usage in relation to disability dates to the 1970s, when it was a central tenet in the emergence of the normalization principle and its application to services for people with mental retardation in the United States. With the subsequent success of the Independent Living movement during the 1970s and 1980s (Ward, 1996), the construct emerged as the theme for empowerment for people with disabilities in the 1990s. This hybrid understanding of the construct, as both a personal characteristic and a political ideal, led in turn to increased attention to (and funding for) efforts to promote self-determination within disability policy and practice, as discussed subsequently.

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Yet, while this prominence has brought focus to the importance of enabling and allowing individuals with mental retardation to take greater control over their lives, only a limited amount of that focus has been on research to better understand, conceptualize, and deÞne the construct. The following sections review the extant literature base and introduce theoretical frameworks upon which future research could be based.

III.

RESEARCH IN MENTAL RETARDATION

Like most complex, multidimensional constructs, the Þrst level of deÞning or understanding the construct is to develop a constitutive deÞnition, one which deÞnes the construct by, and in relationship to, other constructs. Theories of selfdetermination, such as those discussed subsequently, often rely on such constitutive deÞnitions to describe the relationship between similar constructs and to examine the contribution of one construct to another. Although operational deÞnitions are important for applied efforts to promote outcomes related to a particular construct, constitutive deÞnitions are equally important in theory development. There are a number of psychological constructs that are closely related to the self-determination construct, some of which may be antecedents or contributors to self-determination, others which may be consequent to or outcomes of increased self-determination, and still others that are strongly correlated but not necessarily antecedent or consequent to self-determination. For example, autonomy, selfregulation and human or causal agency are constructs that have been postulated to contribute to self-determination. Quality of life, resiliency, and social inclusion are examples of constructs to which self-determination has been hypothesized to contribute. Because the literature base that explores issues of self-determination as they apply speciÞcally, and not just peripherally, to people with mental retardation is limited, it is necessary to review the literature beyond just global self-determination and mental retardation and to include an overview of mental retardation and its relationship to some of the constructs constitutively related to self-determination. In so doing, however, one risks providing short shrift to any given topic, particularly since each such review could likely become a chapter in and of itself. The following sections examine the extant literature pertaining to self-determination and mental retardation and then provide a cursory examination of mental retardation and several closely related constructs, including self-regulation, choice and decision making, and problem solving. The intent of these brief explorations is not to provide an exhaustive treatment of that research, other than that which pertains speciÞcally to mental retardation and self-determination, but instead to highlight general Þndings in and knowledge about these areas and their potential to contribute to our broader understanding of self-determination and mental retardation.

12 A.

Michael L. Wehmeyer Research on Self-Determination and Mental Retardation

As introduced in a previous section, among the Þrst uses of the term selfdetermination within the disability literature occurred in a chapter by Nirje (1972) in WolfensbergerÕs (1972) text on the principle of normalization. It is signiÞcant to note that this call was in reference to the experience of people with mental retardation, primarily because there remains considerable confusion or misinformation that lead people to conclude that people with mental retardation cannot be Òself-determined.ÓFor example, Wehmeyer, Agran, and Hughes (2000) recently surveyed teachers working with students with mental retardation or learning disabilities to determine their beliefs about the importance of self-determination and to examine the degree to which they translate those beliefs into instructional opportunities. While virtually all teachers believed that teaching self-determination was important to their students, teachers working with students with mental retardation were much less likely to do so. When asked to identify why they might not teach students to become more self-determined, these respondents indicated that they believed that, due to cognitive limitation, their students could not beneÞt from such instruction. Thus, despite Nirjes plea to the contrary, the applicability of the construct self-determination in the lives of individuals with mental retardation is of recent vintage. There are, however, a few studies that describe the relative self-determination of individuals with mental retardation. 1. HOW SELF-DETERMINED ARE PEOPLE WITH MENTAL RETARDATION? While there are a growing number of book chapters, articles, and position papers that extol the virtues of promoting the self-determination of individuals with mental retardation (Bambara, Cole, & Koger, 1998; Brown, Gothelf, Guess, & Lehr, 1998; Wehmeyer, 1992, 1996, 1998), there are few data-based explorations of the relative self-determination of individuals with mental retardation. There are multiple factors that account for this circumstance, among them the previously mentioned assumption that people with mental retardation are not or cannot become self-determined and difÞculties in measurement, including both the lack of reliable, valid measures of this complex construct and issues pertaining to threats to reliability and validity inherent in assessment with individuals with mental retardation. Wehmeyer and Metzler (1995) examined the self-determination of over 4500 adults with mental retardation by analyzing data from a national survey of the independence, productivity, and integration of Americans with developmental disabilities. Findings from this study illustrate the degree to which most adults with cognitive disabilities lack opportunities to assume control in their lives and speak to the relative self-determination of this population. From this sample, only 33% of respondents indicated that they had a choice regarding where they currently

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lived; 12% had a voice in hiring the staff or attendant who worked with them; 21% chose, either with or without assistance, their roommate; 44% chose their job or day activity; 26% indicated they had the opportunity to pay their own bills; and 42% indicated they did any banking on their own. The overall picture provided by this study suggested that too many people with mental retardation lack opportunities to control their lives and their destinies. Wehmeyer and Metzler (1995) noted several trends from the data. First, they observed that the probability that people with mental retardation would be allowed to participate in decisions and make choices that affected their lives seemed to be related to the relative importance of such decisions and choices. That is, individuals were more likely to have control over minor choices and decisions, such as what clothes they wore or the leisure activity in which they were engaged, but were not likely to be involved in weightier decisions, such as choosing their roommates or providing consent for medical treatment. Second, they noted that the choices that individuals with mental retardation had the opportunity to make tended to be limited in scope and variety. Third, Wehmeyer and Metzler suggested that adults with mental retardation were, by and large, not assuming roles and engaging in activities that serve to deÞne an individual as an adult, like getting married, raising a family, working competitively, or living independently. Wehmeyer,Kelchner, and Richards (1995,1996) examined the self-determination of 408 adults with mental retardation to determine relative self-determination status using an expansion of the survey analyzed by Wehmeyer and Metzler (1995). They conÞrmed the Þndings from the previous study indicating that people with mental retardation experience limited self-determination and also identiÞed the environments in which persons lived as contributing to self-determination status. 2. FACTORS INFLUENCING AND IMPORTANCE OF SELF-DETERMINATION TO PEOPLE WITH MENTAL RETARDATION Wehmeyer and Bolding (1999) conducted a matched-samples study to more explicitly examine the role of environment on relative self-determination. Twohundred seventy-three individuals with mental retardation were recruited based on the degree to which they worked or lived in one of three environments hypothesized to limit or promote self-determination: (1) community-based (e.g., independent living or competitive employment), (2) community-based congregate (e.g., group home or sheltered employment), and (3) non-community-based congregate (e.g., institution or work activity program). Participants in each environmental group were matched with one other person in each other group based on IQ score (within 5 points), and, when possible, by age (within 8 years) and gender. This resulted in 91 matched triplets in which individuals differed only by environment in which they lived or worked. Analysis of variance by group for scores from measures of self-determination and autonomy yielded signiÞcant differences by setting on both

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measures. Post hoc analyses of autonomy scores indicated signiÞcant differences between people living or working in community-based settings and both people living or working in community-based congregate settings (group homes or sheltered workshops) and people living or working in non-community-based congregate settings (institution, nursing home, or day program), with community-based group scores signiÞcantly more adaptive than the other two groups. Groups also differed signiÞcantly on self-determination scores with post hoc analyses indicating significant differences between people living or working in community-based settings and people living or working in community-based congregate settings and in noncommunity-based congregate settings (institution, nursing home, or day program; p = .045). There were no signiÞcant differences between the congregate settings on either measure. Analysis of variance by settings on a measure of opportunity to make choices in residential settings indicated highly signiÞcant differences by group, with post hoc analysis showing signiÞcant differences between people who lived in communitybased settings and both people who lived in more restrictive settings and who lived in the most restrictive settings but no differences between people who lived in either congregate setting. Since many people with mental retardation live and work in congregate settings, this study suggests that the restricted self-determination may be a function of more than just limited capacity, but instead of the environments that people access. Tossebro (1995) came to a similar conclusion about the impact of the size of facilities, in terms of number of residents and staff density, on the relative self-determination of people with mental retardation. After moving from a work or living environment that was more restrictive to one which was community-based and less restrictive, research participants showed statistically signiÞcant gains in self-determination and autonomous functioning and reported they had more choice opportunities. A potential confound with both of these studies is that people who are more self-determined are more likely to end up in favorable circumstances. To examine this issue, Wehmeyer and Bolding (2000) measured the self-determination of 31 individuals with mental retardation who were transitioning from a more restrictive to less restrictive setting (e.g., group home to supported living and sheltered workshop to competitive employment). Data were collected 6 months prior to and 6 months after the move. Paired-sample t tests examining pre and postmove differences on self-determination and autonomy for all participants indicated signiÞcant differences on both measures and, in both cases, mean scores were more adaptive after the person transitioned to the new living or work environment. There were similar Þndings on a measure of choice in residential settings for individuals who made a living-related move. Wehmeyer and Schwartz (1998) measured the self-determination of 50 adults with mental retardation residing in group homes and also collected data on individual quality of life. Higher self-determination scores were predictive of more

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positive quality of life scores. Similarly, Wehmeyer and Schwartz (1997) measured the self-determination of adolescents with mental retardation (in addition to adolescents with learning disabilities) and found that 1 year after graduation from high school, students who were more self-determined had achieved more favorable adult outcomes, particularly in securing paid employment. Additionally, Sands, Spencer, Gliner, and Swaim (1999) found that student self-determination was one predictor of active student involvement in educational planning and decision making. In summary, the existing research base related to self-determination and mental retardation suggests that greater self-determination contributes to more active involvement in educational planning and decision-making for youth with mental retardation, is predictive of more positive adult outcomes when these young people exit school, and results in a higher quality of life for adults with mental retardation. Yet despite these beneÞts, it appears that most adults with mental retardation are not self-determined and have limited opportunities to assume greater control over their lives and that while teachers value self-determination, most students with mental retardation are not receiving targeted instruction to enhance this outcome. B.

Research on Self-Regulation in Mental Retardation

Self-regulation is, like self-determination, a multidimensional construct. Ridley, Schutz, Glanz, and Weinstein (1992) identiÞed three Òprimarydimensions of selfregulation: (a) developing metacognitive awareness about self, environment, and situation; (b) establishing, clarifying and using goals based on that awareness; and (c) implementing and monitoring actions for the purpose of achieving these goalsÓ (p. 294). Whitman (1990) deÞned self-regulation as Òacomplex response system that enables individuals to examine their environments and their repertoires of responses for coping with those environments to make decisions about how to act, to act, to evaluate the desirability of the outcomes of the action, and to revise their plans as necessaryÓ(p. 373). Schunk (1994) identiÞed self-regulation, within the speciÞc context of self-regulated learning, as Òtheprocess whereby students activate and sustain cognitions, behaviors, and affects that are systematically oriented toward the attainment of goalsÓ(p. 75). Mithaug (1993) noted that all organisms self-regulate and that while intelligence may not be necessary for self-regulation, as evidenced by the self-regulation of single-cell organisms, self-regulation is, conversely, necessary for intelligence. ÒThemore complex the organismÕs central nervous system,ÓMithaug noted, Òthemore adaptive is its self-regulatory capacityÓ (p. 43). Given the relationship between self-regulation and adaptive behavior, it is not surprising that deÞcits in self-regulation have been identiÞed as a function of level of intellectual functioning. Whitman (1990) proposed that mental retardation was, fundamentally, a self-regulatory disorder and should be reconceptualized as such

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and not as a disorder of intelligence. Whitman argued that Òself-regulation is a complex skill, but nevertheless a skill, that develops like less complex behaviorÓand that Òself-regulation is basically a linguistically guided process and that children with retardation because of their linguistic deÞciencies are delayed in developing this skillÓ(p. 349). That Whitman would forward the suggestion that mental retardation is a selfregulatory disorder speaks to the presumption that people with mental retardation do not self-regulate their behavior, a presumption that has been adequately conÞrmed in research (Litrownik, Cleary, Lecklitner, & Franzini 1978; Meichenbaum, 1990; Whitman, 1990). There is a voluminous literature that examines the degree to which people with mental retardation can learn and apply some of the fundamental self-management strategies that enable one to self-regulate behavior, including self-monitoring (Ackerman & Shapiro,1984; Litrownik, Freitas, & Franzini, 1978; Lovett & Haring, 1989; Misra, 1992; Schloss & Wood, 1990; Sowers, Verdi, Bourbeau, & Sheehan, 1985) and self-evaluation (Agran, 1987; Horner & Brigham, 1979; McCarl, Svobodny, & Beare, 1991). This research body provides abundant evidence that individuals with mental retardation can learn and apply self-management strategies that enable them to more effectively selfregulate their behavior. Such self-regulation is critical to promoting autonomy, self-sufÞciency and self-determination. C.

Research on Problem Solving and Decision Making in Mental Retardation

Previous reviews of problem solving in the International Review of Research in Mental Retardation (Ferretti & Cavalier, 1991; Short & Evans, 1990) provide extensive overviews of issues in cognitive and social problem solving and mental retardation, and readers are referred to these comprehensive reviews for detailed information. Brießy, however, the research examining problem solving and mental retardation has suggested that people with mental retardation are often not strategic in their approach to a problem and exhibit a largely inßexible pattern of problem-solving skills (Ellis, Woodley-Zanthos, Dulaney, & Palmer, 1989; Ferretti & ButterÞeld, 1989; Ferretti & Cavelier, 1991; Short & Evans, 1990). This pattern, labeled cognitive rigidity by Gestalt psychologists, Òischaracterized by repetition of past strategies to solve current problems without adapting to new stimuli or new task demandsÓ(Short & Evans, 1990, p. 95). Ferretti and Cavalier (1991), in reviewing literature pertaining to the constraints on problem solving for people with mental retardation, concluded with the following: 1. People with mental retardation are sometimes strategic. They produce strategies when the task is not too difÞcult, when they understand the task requirements, and when they have the knowledge needed to design strategies. Each of these, in turn, is impacted by functional working memory capacity.

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2. People with mental retardation sometimes transfer strategies. While people with mental retardation often do not use strategies outside of a particular situation in which they were learned, teaching them self-management strategies can produce some successful strategy transfer across situations, given that individuals have extended practice with multiple exemplars. In their review of studies examining cognitive problem solving of people with mental retardation, Short and Evans (1990) identiÞed three primary differences between problem-solving strategies of people with and without mental retardation: (1) the ability to represent the problem, (2) the ßexible use of strategies, and (3) the utilization of background knowledge on well-deÞned tasks. Inßexibility is also evident in social problem-solving situations. Wehmeyer and Kelchner (1994) examined the social problem-solving skills of adults with mental retardation and found that this group generated fewer potential solutions to social problems and that a greater proportion of solutions generated were irrelevant. Historically, however, research on problem-solving capacity and mental retardation was yoked to the examination of problem-solving as a dependent variable to measure variances in cognitive, linguistic, or other domains in children with and without disabilities instead of being in and of itself the focal point of research. For example, Gruen and Korte (1973) used problem-solving tasks to test hypotheses related to theories about cognitive development for children with mental retardation. Early exceptions to this trend appear when problem solving is the means to an end, such as verbal problem solving to improve math achievement for students with mental retardation (Cruickshank, 1948; Finley, 1962; Schenck, 1973). More recently, there have been studies reversing these trends and examining the degree to which individuals with mental retardation can acquire effective problem-solving strategies as an end unto itself. Castles and Glass (1986) found that training improved social problem-solving skills of youth with mild and moderate mental retardation. Browning and Nave (1993) used an interactive, video-based curriculum to teach social problem-solving skills to youth with mild mental retardation and learning disabilities. Alper (1985) found that teacher questioning strategies could increase the problem-solving capacity of students with mental retardation. Additionally, research conÞrms that problem-solving is an important skill to acquire. Healey and Masterpasqua (1992) examined the social problem-solving of elementary school students with mental retardation as a function of their adjustment to regular education classrooms. These researchers hypothesized that strong social problem-solving skills would be related to more positive peer relations and behavioral adjustment in the classroom. They found that this was indeed the case and that classroom adjustment could be predicted by interpersonal cognitive problemsolving skills. Park and Gaylord-Ross (1989) compared social skills training without problem-solving training to a general social program that incorporated problem-solving training for youth with developmental disabilities. They found

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that the social problem-solving training procedure increased generalization and maintenance of the targeted social behaviors. Wehmeyer, Mithaug, and others (Gilbert, Agran, Hughes, & Wehmeyer, in press; Mithaug, Wehmeyer, Agran, Martin, & Palmer, 1998; Wehmeyer, Palmer, Mithaug, Agran, & Martin, 2000) have developed a model of teaching to enable educators to promote self-regulated problem-solving skills of youth with disabilities, including students with mental retardation. Through this model of teaching, educators enable students to pose a series of 12 questions which, in groups of four, enable students to solve a problem and set a goal, develop an action plan, and implement and evaluate this plan to achieve self-selected goals. Wehmeyer et al. (2000) showed that students with mild mental retardation who received instruction with the model achieved educationally important transition goals and also showed enhanced self-determination and goal-directed behavior. Gilbert and colleagues (in press) showed that students with more severe mental retardation also beneÞted from instruction with the model, improving behaviors related to participation in the general education class signiÞcantly over baseline. There have been relatively few efforts to examine the decision-making capacity of people with mental retardation, but over the past Þve years Hickson and Khemka have conducted a series of studies to provide more information about decision making and people with mental retardation and to provide a model for enhancing decision-making skills (Hickson & Khemka, 1999). Khemka (1997) compared two decision-making training approaches and their impact on decision-making related to three types of abusive situations (physical, sexual, or verbal abuse). One was a standard decision-making approach providing instruction in the use of a speciÞc decision-making strategy incorporating alternative solution generation and consequential thinking. The second was a self-directed decision-making approach. She found that participants in the self-directed decision-making group provided signiÞcantly more independent decision-making responses, showed enhanced perceptions of control, and reduced decisional avoidance responding when compared with peers who received training using the standard instructional approach. Summarizing, it is evident that individuals with mental retardation have deÞcits in areas of problem solving and decision making. However, there have been an increased research interest in determining the degree to which people with mental retardation can increase their problem-solving and decision-making skills, and this research indicates that given adequate opportunities to do so, individuals are successful and also beneÞt from the experience. D.

Research on Choice Making

Perhaps the one element of self-determined behavior that hasnÕt been overlooked as it pertains to individuals with mental retardation is that of choice making. There have been training programs developed to teach choice-making and

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increase choice-making behaviors (Gothelf, Crimmins, Mercer, & Finocchiaro, 1994; Parsons, McCarn, & Reid, 1993; Reid, Parsons, & Green, 1991; Warren, 1993), efforts to increase the diversity of choices for people with disabilities (Brown, Belz, Corsi, & Wenig, 1993), discussions about the importance to people with disabilities of making choices (Ficker-Terrill & Rowitz, 1991; Guess, Benson, & Siegel-Causey, 1985; Shevin & Klein, 1984; West & Parent, 1992), procedures developed to assess individual preferences and choices (Mithaug & Hanawalt, 1978; Stancliffe, 1995), and research efforts to determine the degree to which people with disabilities express choices and preferences (Houghton, Bronicki, & Guess, 1987; Kishi, Teelucksingh, Zollers, Park-Lee, & Meyer, 1988; Stancliffe & Wehmeyer 1995; Wehmeyer et al., 1995; Wehmeyer & Metzler, 1995). There is also a signiÞcant research body examining basic aspects of choice making. Fisher and Mazur (1997) provide a comprehensive examination of basic and applied studies from the applied behavior analysis perspective, with ÒbasicÓstudies being those Òinwhich the primary goal is to elucidate the variables that determine how individuals allocate their responding or time across available optionsÓ(p. 388). Once again, space limitations prohibit a detailed discussion of this literature and readers are referred to Fisher and Mazur (1997) for such a discussion. Making a choice consists of two primary actions: (1) identifying a preference among two or more options and (2) communicating that preference. Wehmeyer, Sands, Doll, and Palmer (1997) noted that these elements appear very early in child development and that by 6 to 8 months of age, children can communicate preferences through basic communicative efforts and by the onset of language development; typically between 14 and 18 months of age, children have all the fundamental prerequisites to make choices. Wehmeyer (1998), discussing issues of self-determination for individuals with signiÞcant cognitive disabilities, noted that all persons express preferences and that while people with severe disabilities may need support and intervention to enable them to communicate those preferences more effectively, or the people in their lives may need to employ more sophisticated means of assessing and determining those preferences, they can, nonetheless, make choices that inßuence their lives. Choice making is also important in that it is one step in the decision making process. Thus, although some individuals with signiÞcant cognitive disabilities may not be able to make independent decisions, all people can participate in the decision-making process by making choices and can likely beneÞt from instruction in making decisions. 1. OPPORTUNITIES TO MAKE CHOICES AVAILABLE TO PEOPLE WITH MENTAL RETARDATION The scientiÞc literature base addressing choice making and mental retardation has emphasized several aspects. First, studies have examined the degree to which people with mental retardation had the opportunity to make choices and express preferences. Stancliffe and Wehmeyer (1995) reviewed the literature related to

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choice making by people with mental retardation and developmental disabilities and concluded that individuals had few opportunities to make meaningful choices. Similarly, Wehmeyer, Kelchner, and Richards (1995) found that in a sample of more than 400 members of self-advocacy groups a large percentage made few choices in their lives. For example, 30% of the group indicated they did not choose where they lived and only 15% indicated they had selected where they live unassisted. Comparatively, Kozleski and Sands (1992) used the same survey with adults without disabilities and found that only 10% indicated they had no choice in where they lived and 13% had no choice in their roommates. Kishi, Teelucksingh, Zollers, Park-Lee, and Meyer (1988) compared the everyday choice and choice-making opportunities of individuals with mental retardation living in group homes with adults without mental retardation. They found that the adults with mental retardation had signiÞcantly fewer opportunities to make choices across a wide array of circumstances, from what to wear or eat to how to spend free time. Stancliffe and Abery (1997) conducted an examination of opportunities available to people with mental retardation to make choices as a function of where they lived by comparing choices made by individuals who had moved from an institution to the community with choices by people who had stayed in the institution instead of moving. People who moved had signiÞcantly more choice opportunities after the move even though the groups did not differ at baseline, and these differences were not a function of level of intellectual impairment. Stancliffe and Abery noted, however, that the absolute level of choice-making opportunities available to all persons in the study was very low. Stancliffe (1997) found that the size of a personÕs residence signiÞcantly inßuenced the opportunities that person has to make choices, with adults with mental retardation who lived in small settings, that is community-based settings in which there were fewer staff and fewer other residents, had signiÞcantly more opportunities to make choices. These studies provide a sampling of the growing literature base that indicates that people with mental retardation have limited opportunities to make choices and express preferences. This is in spite of multiple beneÞts to doing so discussed subsequently. 2. ASSESSING PREFERENCES AND PROMOTING CHOICE-MAKING SKILLS Perhaps the most important action to be taken to enable people with mental retardation to express preferences and make choices is to simply provide such opportunities. Thus, Brown, Belz, Corsi, and Wenig (1993) provided suggestions to teachers regarding how to infuse choice-making opportunities into instructional activities throughout the school day. There are, however, some individuals who need more targeted instruction on how to appropriately communicate their preferences, and a number of studies have provided evidence that this can be readily accomplished. Similarly, the technology around assessing preferences of people

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with signiÞcant disabilities has become more sophisticated. Lohrmann-OÕRourke and Browder (1998) and Hughes, Pitkin, and Lorden (1998) provided recent reviews of assessment activities. Strategies identiÞed in these reviews included assessing responses using microswitches, observing approach-behavior, recording verbalizations and gestures associated with the presentation of options, measuring time-on-task or engagement time, and so forth. Such assessment activities have been applied to a wide array of settings, from examining vocationally related task preferences of adults with mental retardation (Mithaug & Hanawalt, 1978; Parsons, Reid, & Green, 1998) and leisure preferences (Nietupski et al., 1986; Nozaki & Mochizuki, 1995) to promoting community-based instruction (Cooper & Browder, 1998). There are numerous studies describing procedures to teach choice making to individuals with mental retardation and signiÞcant disabilities. Bambara and Ager (1992) used cards that contained pictures or words that described leisure activities to help three adults with moderate disabilities choose leisure activities in which they wished to engage Participants learned to use the cards to choose and schedule weekly leisure activities. Several studies have investigated teaching people with signiÞcant disabilities to exercise choice at mealtimes. Parsons and colleagues (Parsons & Reid, 1990; Parsons et al., 1993) provided adults with mental retardation opportunities to choose between one of two food or drink items throughout a meal. Participants were prompted to choose an item if they did not do so independently. Upon choosing a particular item, the item was immediately provided to the participant. Findings of both studies revealed that providing access to a choice immediately following a choice response resulted in increases in choice-making by all participants. Gothelf, Crimmins, Mercer, and Finocchiaro (1994) used a similar method to teach mealtime choice making to students who were deaf, blind, and had multiple disabilities. Tactile cues and physical guidance were provided to accommodate for the studentsÕsensory impairments and, upon choosing a sample of an item, students were provided with a full portion of the chosen food. Studies that have investigated the development of choice-making skills stress the importance of systematically providing contingent consequences to emerging choice responses (Dattilo & Mirenda, 1987; Sigafoos & Dempsey, 1992). Sigafoos and Dempsey argued that behaviors such as approaching or reaching for a preferred item could be shaped as choice-making responses by systematically providing access to the chosen item after the response has been made. For example, to teach students to make choices by manipulating electronic microswitches, Dattilo and Mirenda used computers to provide immediate access to a chosen item following a studentÕs activation of a microswitch. Similarly, Kennedy and Haring (1993) taught four students with multiple disabilities to use a microswitch communication system to request changes in leisure activities in which they were engaged with a partner. Prompting and reinforcement procedures were used to teach students to press a microswitch that activated a tape-recorded message that requested a

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change in activities (e.g., ÒCanwe do something else?Ó).Choice-making training resulted in increases in diversity of activities chosen, time engaged in activities, and interactions with social partners. 3. CHOICE MAKING AND PROBLEM BEHAVIORS A third body of literature around choice making and mental retardation involves research examining the link between expressing preferences and making choices and problem behaviors. Dunlap and colleagues (1994) summarized the research around choice making as a management strategy. They concluded that making choices can lead to enhanced and more adaptive forms of responding, including improved social behavior and task performance, and can help reduce problem behaviors. Munk and Repp (1994) identiÞed allowing students to choose tasks as an instructional variable that served as a nonaversive intervention for problem behaviors, and making choices is a key component of positive behavioral support (Carr et al., 1999). As one example of the utility of choice making as an instructional tool, Umbreit and Blair (1996) showed that providing a student with mental retardation who engaged in several problematic behaviors with the opportunity to engage in preferred activities and make choices resulted in the virtual elimination of all problem behaviors. E.

Summary

This overview of self-determination and mental retardation and cursory examination of constructs conceptually related to self-determination indicates that the predominant experience of most people with mental retardation is that they have limited control over or do not self-regulate their lives, too infrequently participate in decisions that impact their lives, have limited opportunities to express preferences and make choices, and do not engage in problem-solving actions. This circumstance is a function of behavioral and cognitive limitations associated with the condition of mental retardation, limited opportunities and experiences that promote self-determination, and low or limited expectations for positive outcomes in the lives of people with mental retardation. The research also suggests that just as self-determination, self-regulation, problem-solving and decision-making capacity, and choice-making opportunities are important to people without mental retardation, so too are these beneÞcial to individuals with cognitive and developmental disabilities. Because the emergence of self-determination as a construct applied to people with mental retardation is a recent event, the previous Þndings are not particularly surprising, nor should it be surprising that theory development in this area is in its early stages. Because of the complexity of the construct and its potential importance in the lives of individuals with mental retardation, it is important to lay a solid foundation in theory development so that more applied efforts can

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proceed based on a knowledge of the construct, its development and emergence, and what individual and environmental variables inßuence this emergence. The Þnal section of this chapter addresses four theoretical models that may provide such a foundation.

IV.

MODELS OF SELF-DETERMINATION AND MENTAL RETARDATION

This section examines four theoretical frameworks within which the construct of self-determination has been deÞned and applied to the lives of people with mental retardation. These four models, AberyÕs ecosystems model, MithaugÕs selfregulation model, PowersÕmotivation model, and WehmeyerÕs functional model, do not constitute the only models of self-determination, even within the disability Þeld. There are several frameworks within which the term Òself-determinationÓ has been deÞned and operationalized (Abery, 1993; Brown & Gothelf, 1996; Field,1996; Field & Hoffman,1994; Mithaug, 1996; Powers et al., 1996; Wehmeyer, 1996; Wehmeyer, Kelchner, & Richards, 1996). There are a larger number of programmatic efforts to promote self-determination that, implicitly, deÞne the construct by the types of activities and interventions introduced and implemented (Agran, 1997; Carter-Ludi & Martin, 1995; Martin & Marshall, 1996; Serna & LauSmith, 1995; Van Reusen, Bos, Schumaker, & Deshler, 1994). The work of Field and colleagues (Field, 1996; Field & Hoffman, 1994) has, for example, provided a model of self-determination as the basis for instructional and curricular approaches. These four models were selected, however, based on their potential utility in fostering the understanding of self-determination as it pertains to individuals with mental retardation, including people with the most severe cognitive impairments. Other models may, by assumptions inherent in the model, exclude people with mental retardation as being able to become self-determined or, more frequently, have just not addressed the application of their model to people with mental retardation. Each of these four have, at least to some extent, applied model development activities to people with mental retardation. In addition, they have both deÞned the construct and have hypothesized about its categorization and Þt within other theoretical frameworks. A.

An Ecosystems Model of Self-Determination

Motivation researchers, primarily Deci and colleagues (Deci & Ryan, 1985), conceptualized self-determination as an internal need contributing to an individualÕs performance of intrinsically motivated behaviors. Self-determination is, in their conceptualization, Òtheinnate, natural propensity to engage in oneÕs interests and exercise oneÕs capacities, and in so doing, to seek and conquer optimal

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challengesÓ(Deci & Ryan, p. 43). Abery (1994) conceptualized self-determination as Òanintrinsic drive to be the primary determiner of oneÕs thoughts, feelings, and behaviorsÓ(p. 2) and thus shares DeciÕs focus on the innate nature of selfdetermination. SpeciÞcally, Abery views self-determination as a process, Òdriven by the intrinsic motivation of each of us to be the primary determiner of our thoughts, feelings, and behavior (Abery & Stancliffe, 1996). Consistent with the conceptualization of self-determination as essentially an innate or intrinsic drive, AberyÕs work has focused primarily on the role of environment, stating that Òbyfocusing primarily on the individual, many models have not adequately acknowledged the important role of environmental factors in the self-determination processÓ(p. 113). Abery (1993) proposes an ecological framework for conceptualizing and understanding self-determination in which Òself-determinationcan be conceptualized as a product of an ongoing interaction between individuals and the multiple environments within which they functionÓ(Abery & Stancliffe, 1996, p. 114). He notes that this perspective does not mitigate or abrogate the importance of personal characteristics, but views self-determination within an environmental context; an ecosystem. Figure 1 illustrates AberyÕs model of self-determination. This analysis begins with personal characteristics important to self-determination, composed of selfdetermination related skills, knowledge, and motivation bases, and expands to examine the inßuences on self-determination at four ecological levels, the microsystem, the mesosystem, the exosystem, and the macrosystem. Abery identiÞes several individual factors or characteristics that impact self-determination and which comprise the self-determination skills base of his model. The majority of these, Abery states, ÒentailspeciÞc social skills that enhance an individualÕs ability to exert personal controlÓ(p. 353) and include personal choice and decisionmaking skills, self-management and regulation skills, personal advocacy skills, and problem-solving skills. Additional personal factors identiÞed include the individualÕs knowledge base, social and communication skills, sense of self-efÞcacy, and attributions for success and failure.The second level of individual factors involve those in the self-determination knowledge base. This, according to Abery, involves a working knowledge of the environment in which functioning will occur as well as knowledge about oneÕs own competencies and skills. These include declarative knowledge, deÞned as the factual knowledge one possesses about oneÕs environment, and procedural knowledge about how to engage oneÕs environment. The third knowledge type within this base is self-knowledge, deÞned as oneÕs awareness of and ability to accurately assess his or her competencies and skills. The third individual factorÕs base is the self-determination motivational base, which include the constructs of self-efÞcacy, locus of control, and attributions for success and failure.

FIG. 1. Abery s process model of self-determination. (From Institute on Community Integration, University of Minnesota. Reprinted with permission)

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AberyÕs ecosystem model of self-determination proposes that the development of self-determination occurs as a result of interactions between these individual factors and the environments within which that person functions. That environment is described in an ecosystem perspective as representing the microsystem, mesosystem, exosystem, and macrosystem levels. Brießy, the microsystem level refers to analysis of the impact of the immediate settings in which persons typically function, including home and family, community, schools, and peer groups, on self-determination. Such interactions do not occur in isolation, so the mesosytem inßuences refer to the interactions between and among entities within the microsystem analysis. To what degree do skills and behaviors learned in one environment generalize to others? How does the interaction between home and school impact both of these environments and, consequently, student self-determination? At the exosystem level of analysis one takes into account the impact of settings in which people do not directly participate, but which nonetheless inßuence selfdetermination. Abery (1993) noted that the training a teacher receives in college or in other settings will inßuence how that teacher runs his or her classroom, which in turn will impact studentsÕopportunities for choice making, decision making, and so forth. At the Þnal level of analysis, the macrosystem, one examines the beliefs, attitudes, and values held by a culture and its members and considers the impact of these on self-determination. AberyÕs ecological model was the basis for the development of assessment and curricular materials to promote self-determination which have been evaluated with students with mental retardation. Abery, Rudrud, Arndt, Schauben, and Eggebenn (1995) developed a multicomponent competency-building curriculum for use with students and a companion program for families. The classroom competencybuilding modules were (a) self-awareness, (b) self-esteem, (c) enhancing perceptions of personal control, (d) values, (e) goal setting, (f ) assertive communication, (g) choice making, (h) realizing your vision, (i) problem solving, and ( j) personal advocacy. Assessment instruments included the Self-Determination Observation Skills Evaluation Scale (SDSES: Abery & Eggebeen, 1992a), a behavior rating scale designed to assess the degree to which raters have observed various skills and behaviors related to self-determination over a 3-month period, and the Opportunity and Exercise of Self-Determination Scale (OESDS; Abery & Eggebeen, 1992b), a self-report indicator of opportunities to exercise personal control. A Þeld test of the curriculum with adolescents with mental retardation, using the assessments, found that students beneÞted from instruction, making improvements in areas of choice making, problem solving, self-regulation, and assertiveness/self-advocacy. B.

Self-Determination as Mastery Motivation and Efficacy Expectations

Powers et al. (1996a, 1996b) conceptualized self-determination as a function of mastery motivation (characterized by perceived competence, self-esteem,

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maintenance of an internal locus of control, and internalization of goals and rewards) and self-efÞcacy expectations. Self-determination is deÞned as referring to Òpersonalattitudes and abilities that facilitate an individualÕs identiÞcation and pursuit of goalsÓ(p. 292). The promotion of self-determination, within this model, results from experiences and efforts that reduce learned helplessness and promote mastery motivation and self-efÞcacy expectations. Quite speciÞcally, in this model self-determination is viewed as antithetical to learned helplessness and an outcome of promoting mastery motivation and self-efÞcacy expectations (Powers et al., 1996b). Powers et al. (1996b) deÞned learned helplessness (Seligman, 1975) as an Òacquiredbehavioral disposition characterized by passivity, self-denigration and internalization of devalued social status, perpetuated through permanent, pervasive, internalized negative self-attributionsÓ(pp. 259Ð260). Learned helplessness is reinforced by Òenvironmental factors that encourage passivity by (1) providing little opportunity for an individual to actively make choices and generate successful responses, (2) communicating expectations of non-involvement or failure, or (3) reinforcing failure or not reinforcing strivingÓ(p. 260). Powers and colleagues identify factors that promote learned helplessness as including overprotection and economic, academic, or social deprivation. Comparatively, self-determination might be construed as an acquired behavioral disposition characterized by self-directed, goal-oriented behavior. This disposition is the outcome of mastery motivation and self-efÞcacy appraisals and expectations. The former draws from research by Harter (1981), examining how youth acquire a generalized positive disposition toward achievement and striving. Mastery motivation is Òcharacterizedby perceived competence, self-esteem, maintenance of an internal locus of control, and internalization of goals and rewardsÓ(Powers et al., 1996b; p. 294). Self-efÞcacy expectations derive from BanduraÕs (1977, 1986) theory of self-efÞcacy which, according to these researchers, Òprovides a detailed framework for understanding speciÞc inßuences on the development of self-determinationÓ(Powers et al., 1996b, p. 294). Brießy, self-efÞcacy theory postulates two components, outcome expectations (belief about whether a particular behavior will lead to a particular consequence) and personal efÞcacy expectations (a personÕs expectations regarding his or her capability to realize a desired behavior within a speciÞc context). Self-efÞcacy appraisals are impacted by four speciÞc sources: (1) enactive attainment, derived from repeated performance accomplishments; (2) vicarious experiences, observing otherÕs success and effective management of challenges; (3) social persuasion, including encouragement, evaluative feedback, reinforcement, or challenge; and (4) physiological feedback. While PowersÕtheory that self-determination is an acquired behavioral disposition that is the outcome of mastery motivation and self-efÞcacy expectations is a testable model, to this date most research on the model has taken place as part of an overall intervention effort. Powers and colleagues have developed and Þeldtested a programmatic effort drawing from the conceptual foundations of mastery motivation and self-efÞcacy theory, called the ÒTAKE CHARGEÓmodel, which

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is designed to promote adolescent development of self-determination through four primary components: skill facilitation, mentorship, peer support, and parental support. This programmatic effort has been shown to be effective with a wide array of students at risk for learned helplessness, including students with mental retardation (Powers et al., 1996b). Sowers and Powers (1995) applied this approach to increase the participation and independence of students with severe disabilities in performing community activities. C.

Self-Determination as Self-Regulated Problem Solving

Mithaug suggested that Òself-determinationis a special form of self-regulationÑ one that is unusually effective and markedly free of external inßuenceÓ(Mithaug, Wolman, & Campeau, 1992) in which people who are self-determined regulate their choices and actions more successfully than others. Through a series of chapters and articles (e.g., Mithaug 1991, 1993, 1996a, 1996b, 1998), Mithaug has described a model of self-determination as self-regulated problem solving; that is, self-determination as a special form of self-regulation. Mithaug (1993) suggested that individuals are often in ßux between actual or existing states and goal or desired states. When a discrepancy exists between what one has and what one wants, an incentive for self-regulation and subsequent action may be operative. With the realization that a problem or discrepancy exists, the individual may set out to achieve the goal or desired state. Because of a history of failure or a sense of powerlessness or learned helplessness, however, individuals with disabilities may do little to change their situations. They may set expectations that are too low or, in some cases, too high. As Mithaug noted, negative feelings produce low expectations. Inaccurate self-assessments may produce unrealistic or unfeasible expectations. To promote success, individuals need to enhance or increase their expectations. The ability to set appropriate expectations is based on the individualÕs success in matching his or her capacity with present opportunity. Capacity is the individualÕs assessment of existing resources (e.g., skills, interests, and motivation), and opportunity refers to the aspects of the existing situation that will allow the individual to achieve the desired gain. Mithaug referred to optimal prospects as ÒJust-rightÓmatches in which individuals are able to correctly match their capacity (i.e., skills and interests) with existing opportunities (e.g., potential jobs). The experience generated during self-regulation Òisa function of repeated interaction between capacity and opportunity over timeÓ(Mithaug, 1996, p. 159). As Mithaug noted, Òthemore competent we are, the fewer errors we make, and the less time we take, the greater the gain we produceÓ(p. 156). Mithaug (1993) summarized self-regulation theory as stating that Òwemaximize progress toward goals when (1) past gains match expectations, (2) present expectations are the maximum possible, (3) choices are the best possible, and (4) followthrough on choice is as effective and efÞcient as possible. Such circumstances

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optimize adjustment to maximize gain for the individual. Self-determination is a Òvariant of self-regulated behaviorÓ(Mithaug, 1993, p. 61) that Òinvolves selfregulated problem solving to get what you need and want in lifeÓ (Mithaug, Wehmeyer, Agran, Martin, & Palmer, 1998). Mithaug further describes selfdetermination as: solving a sequence of problems in order to construct a means-ends chainÑa causal sequenceÑ that moves us from where we areÑan actual state of not having our needs and interests satisÞedÑ to where we want to beÑa goal state of having those needs and interests satisÞed. It [e.g., selfdetermination] is problem solving to reduce or eliminate this discrepancy between what we want and what we have. (italics added) (p. 303)

According to this analysis, Òself-determinationis more than solving one problem in order to get what one needs and wants in life. It is solving many problems that are connected in a meansÐendchain or chains. Consequently, it requires the regulation of many problem solving activities to connect needs and wants with actions and resultsÓ(pp. 303Ð304). MithaugÕs work has theoretically addressed the distinction between personal self-determination and corporate or political self-determination by postulating that the latter (self-determination as a right or a political ideal) refers to the conceptÕs social component, while the former (personal or individual self-determination) refers to the conceptÕs psychological component (Mithaug, 1998). Thus, instead of addressing these as two differing meanings of the construct, Mithaug proposes two components of the same concept. In 1996, Mithaug proposed Equal Opportunity Theory to address the discrepancy between the right to and experience of selfdetermination, the social and psychological components of the concept, suggesting that such discrepancies are common experiences for people with disabilities and other disenfranchised people. MithaugÕs Equal Opportunity Theory Òlocatesthe cause of this discrepancy in lack of capacity and opportunity among individuals whose personal, social and economic circumstances are beyond their controlÓ (1996b, p. 160). Further, Mithaug states that Òtheoptimal prospects solution [e.g., optimizing prospects for self-determination among the less fortunate by improving their capacity for autonomous thought and action and by improving opportunities for them to make choices and take action] seeks to embody equal opportunity theory by justifying social redress on behalf of people who are least well situated in societyÓby claiming the following: 1. All persons have the right to self-determination. 2. Psychological and social conditions of freedom cause some individuals and groups to experience unfair advantages in determining their future. 3. Declines in prospects for self-determination among the less fortunate are due to social forces beyond their control. 4. As a consequence of these declines, there is a collective obligation to improve prospects for self-determination among least well-situated groups.

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Mithaug (1998) also noted that Òself-determinationalways occurs in a social contextÓ(p. 42). Mithaug suggested that the social nature of the concept is worth reviewing because Òthedistinction between self-determination and other determination is nearly always in play when assessing an individualÕs prospects for controlling their life in a particular situationÓ(p. 42). Mithaug explored this further, stating: The focus on the social nature of the concept directs our attention to the interaction between a personÕs capacity to choose and act and the social environment that mediates opportunities for those choices and actions. It alerts us to the variation in capacityÐopportunityinteractions that enhance or inhibit the empowerment experience. (p. 42)

As discussed in the previous section on problem solving, Mithaug and colleagues (Mithaug et al., 1998; Wehmeyer et al., 2000) have applied aspects of this theoretical framework to develop an instructional model that enables teachers to increase student self-determination by preparing students to become selfregulated problem solvers. This application of both MithaugÕs self-regulation theory and my functional model (below) has been used successfully with students with mild (Wehmeyer et al., 2000) and severe (Gilbert et al., in press) mental retardation. D.

A Functional Model of Self-Determination

Emphasizing the fact that self-determination cannot adequately be deÞned by a response class and, as such, must be operationalized as a construct pertaining to the function of a personÕs behaviors (see previous discussion regarding deÞning the construct), Wehmeyer (1996, 1998) deÞned self-determination as Òacting as the primary causal agent in oneÕs life and making choices and decisions regarding oneÕs quality of life free from undue external inßuence or interferenceÓ (Wehmeyer, 1996, p. 24). Self-determined behavior refers to actions that are identiÞed by four essential characteristics: (1) the person acted autonomously, (2) the behavior(s) are self-regulated, (3) the person initiated and responded to the event(s) in a psychologically empowered manner, and (4) the person acted in a self-realizing manner. These four essential characteristics describe the function of the behavior that makes it self-determined or not. People who consistently engage in Òself-determinedbehaviorsÓcan be described as self-determined, where Òself-determinedÓrefers to a dispositional characteristic. Dispositional characteristics involve the organization of cognitive, psychological, and physiological elements in such a manner that an individualÕs behavior in different situations will be similar (though not identical). Eder (1990) described dispositional states as frequent, enduring tendencies that are used to characterize people and are used to describe important differences between people. As such,

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people can be described as Òself-determinedÓbased on the functional characteristics of their actions or behaviors. The concept of causal agency is central to this theoretical perspective. Broadly deÞned, causal agency implies that it is the individual who makes or causes things to happen in his or her life. An agent is a person or thing through which power is exerted or an end is achieved. Causal agency, as opposed to implying strictly that the individual caused something to happen, implies that something was purposeful or performed to achieve an end. Bandura addresses these issues when describing the nature of human agency. He stated: People can exercise inßuence over what they do. Most human behavior, of course, is determined by many interacting factors, and so people are contributors to, rather than the sole determiners of, what happens to them. In evaluating the role of intentionality in human agency, one must distinguish between the personal production of action for an intended outcome, and the effects that carrying out that course of action actually produce. Agency refers to acts done intentionally. (Bandura, 1997, p. 3)

A causal agent is, then, someone who makes or causes things to happen in his or her life. Self-determined people act as the causal agent in their lives. They act with intent to shape their futures and their destiny. Wehmeyer framed causal agency, and self-determination, within the concept of quality of life. Quality of life is a complex construct which has gained increasing importance as a principle in human services. Schalock (1996) suggested that quality of life is best viewed as an organizing concept to guide policy and practice to improve the life conditions of all people and proposed that quality of life is composed of a number of core principles and dimensions. The eight core principles forwarded by Schalock emphasize that quality of life is composed of the same factors and is important for all people (independent of disability status), is experienced when a personÕs basic needs are met, and is enhanced by integration and by enabling individuals to participate in decisions that impact their lives. The core dimensions of quality of life include (a) emotional wellbeing, (b) interpersonal relations, (c) material well-being, (d) personal development, (e) physical well-being, (f) self-determination, (g) social inclusion, and (h) rights. As Angyal (1941) noted, human beings are not completely autonomous or independent but are interdependent; our lives intermingle with the lives of many others, seen and unseen. For all people, choices are frequently constrained and rarely represent optimal options. We are dependent upon numerous others in our decisions, from close relatives and spouses, to medical professionals or Þnancial advisors. In short, self-determination does not reßect an absence of inßuence or even interference. Instead, it reßects choices and decisions made without undue interference or inßuence. As such, this deÞnitional framework proposes that people

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Michael L. Wehmeyer Development

Learning

Capacity

Environment

Perception/ Belief

Opportunity

Experience

Supports

Autonomy

SelfRegulation

Psychological Empowerment

SelfRealization

Relative Self-Determination

FIG. 2. WehmeyerÕs functional model of self-determination.

are causal agents in their lives, free from ÒundueÓinterference or inßuence, where the term ÒundueÓremains intentionally subjective and contextual, since what may be perceived by one individual to be an acceptable level of inßuence may appear to another as an unacceptable level of interference. This varies both within individuals and within cultures. Self-determination emerges across the life span as children and adolescents learn skills and develop attitudes that enable them to become causal agents in their own lives. These attitudes and abilities are the component elements of selfdetermination, and it is this level of the theoretical framework that drives instructional activities. The model is depicted graphically in Fig. 2. 1. ESSENTIAL CHARACTERISTICS OF SELF-DETERMINED BEHAVIOR People who are self-determined act autonomously, self-regulate their behavior, and are psychologically empowered and self-realizing. The term Òessential characteristicÓimplies that an individualÕs actions must reßect, to some degree,

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each of these four functional characteristics. Age, opportunity, capacity, and circumstances may impact the degree to which any of the essential characteristics are present and, as such, the relative self-determination expressed by an individual will likely vary, sometimes over time and other times across environments. Nonetheless, these essential elements need to be presentÑeach characteristic is a necessary but not sufÞcient characteristic of self-determined behavior. a. Behavioral Autonomy. The link between self-determination and autonomy spans back to the earliest use of the term in personality psychology. My use of the term draws from two primary sources: autonomy as synonymous with individuation from the developmental psychology literature and functional or behavioral autonomy as roughly synonymous with independence, drawn primarily from intervention focused literature. Developmental psychologists view the process of individuation, or the formation of the personÕs individual identity (Damon, 1983), as a critical component of social and personality development. Much of the literature in child development describes this process of individuation and the relationship between individuation and socialization. More concretely, Sigafoos, Feinstein, Damond, and Reiss (1988) deÞned individuation as Òaprogression from dependence on others for care and guidance to self-care and self-directionÓ(p. 432), the outcome of which is autonomous functioning or, when describing the actions of individuals achieving this outcome, behavioral autonomy. Behavioral autonomy, therefore, is the outcome of the process of individuation, and encompasses, fundamentally, actions in which people act (a) according to their own preferences, interests and/or abilities and (b) independently, free from undue external inßuence or interference. b. Self-Regulated Behavior. Self-regulation was deÞned earlier as Òacomplex response system that enables individuals to examine their environments and their repertoires of responses for coping with those environments to make decisions about how to act, to act, to evaluate the desirability of the outcomes of the action, and to revise their plans as necessaryÓ(Whitman 1990; p. 373). Self-regulated behaviors include the use of self-management strategies (including self-monitoring, self-instruction, self-evaluation, and self-reinforcement), goal setting and attainment behaviors, problem-solving and decision-making behaviors, and observational learning strategies (Agran, 1997). c. Psychological Empowerment. The inclusion of psychological empowerment and self-realization as essential characteristics of self-determined behavior illustrates the importance of both cognitive and behavioral contributions to this theoretical framework. As Bandura (1977) noted, a Òtheoryof human behavior cannot afford to neglect symbolic activitiesÓ (p. 13). Similarly, Agran (1997) noted the importance of cognitive behaviors in achieving self-regulation, including the use of metacognitive, self-instruction, self-reinforcement, and observational learning strategies. Psychological empowerment is a construct emanating from the

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community psychology literature and referring to the multiple dimensions of perceived control, including its cognitive (personal efÞcacy), personality (locus of control), and motivational domains (Zimmerman, 1990). Community psychology involves theory, research, and practice relevant to the reciprocal relationships between individuals and the social system which constitute the community context. Zimmerman (1990) proposed a model in which positive perceptions of control (psychological empowerment) are an outcome of Òlearned hopefulness.ÓHe deÞnes learned hopefulness as the Òprocessof learning and utilizing problem-solving skills and the achievement of perceived or actual controlÓ(p. 72). ZimmermanÕs model of learned hopefulness Òsuggeststhat experiences that provide opportunities to enhance perceived control will help individuals cope with stress and solve problems in their livesÓ(pp. 72Ð73). Zimmerman and Rappaport (1988) forwarded the construct of psychological empowerment to account for the multidimensional nature of perceived control, which, according to these authors, had been previously treated as if it were a univariate construct. Zimmerman (1990) found that the three elements of perceived control [e.g., cognitive (selfefÞcacy), personality (locus of control), and motivation (motivation to control)] formed a single discriminant function which distinguished between individuals who scored low or high on a measure of hopelessness or alienation, including indicators of powerlessness and social isolation. Thus, according to Zimmerman, through the process of learning and using problem-solving skills and achieving perceived or actual control in oneÕs life (e.g., learned hopefulness), individuals develop a perception of psychological empowerment which, in turn, enables them to achieve desired outcomes such as social inclusion and involvement in the community. d. Self-Realization. The term Òself-realizationÓwas originally used by Gestalt psychologists to refer to the intrinsic purpose in the life of the person, but also has more global meaning related to the Òtendency to shape oneÕs life course into a meaningful wholeÓ(Angyal, 1941, p. 355). Though not frequently used any longer in the psychology literature, the term captures some nuances or ÒessenceÓ of self-determination missed by other conceptualizations. Basically, this essence is that self-determined people know what they do well and act accordingly. The two most frequently mentioned alternatives to the term Òself-realizationÓare selfactualization and self-awareness, but both have limited utility. Self-actualization, as conceptualized by Maslow (1943), adequately captures the essence of a selfdetermined personÕs actions as capitalizing his or her best assets and becoming all that one is capable of becoming. However, in addition to problems with MaslowÕs deÞnition and theoretical underpinnings of self-actualization (see, for example, Heylighen, 1992), Maslow conceptualized self-actualization as being reached only when all other needs are fulÞlled, and, in fact, attained by a small proportion of people. Conceptualizing self-determination within the construct of self-actualization implies that only a select number of individuals become

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self-determined, and people with disabilities are, almost certainly, not among that select group. Alternatively, the construct of self-awareness fails to capture the sense that self-determined people act on their knowledge about themselves to capitalize on their strengths. As such, people who are self-determined are self-realizing in that they use a comprehensive, and reasonably accurate, knowledge of themselves and their strengths and limitations to act in such a manner as to capitalize on this knowledge. This self-knowledge and self-understanding forms through experience with and interpretation of oneÕs environment and is inßuenced by evaluations of signiÞcant others, reinforcement, and attributions of oneÕs own behavior. 2. COMPONENT ELEMENTS OF SELF-DETERMINED BEHAVIOR As mentioned previously, Wehmeyer and colleagues identiÞed a set of component elements of self-determination. The essential characteristics that deÞne self-determined behavior emerge through the development and acquisition of these multiple, interrelated component elements. Table I lists these elements. Although not intended as an exhaustive taxonomy, these component elements are particularly important to the emergence of self-determined behavior. A complete discussion of each of these component elements is not feasible within the context of this chapter (see Agran, 1997; Wehmeyer, Agran, & Hughes, 1998; or Wehmeyer, 1997 for such a description). However, describing the component elements is important for two reasons. First, it is at this level which instruction occurs. That is, there are instructional strategies, methods, materials, and supports

TABLE I COMPONENT ELEMENTS OF SELF-DETERMINED BEHAVIOR Choice-making skills Decision-making skills Problem-solving skills Goal setting and attainment skills Independence, risk taking and safety skills Self-observation, evaluation, and reinforcement skills Self-instruction skills Self-advocacy and leadership skills Internal locus of control Positive attributions of efÞcacy and outcome expectancy Self-awareness Self-knowledge

36

Michael L. Wehmeyer

which enable educators to ÒteachÓself-determination by enhancing student capacity in each of these areas. Wehmeyer, Agran, and Hughes (1998) identiÞed literally hundreds of instructional strategies and supports to promote these component elements. Second, each of these component elements has a unique developmental course or is acquired through speciÞc learning experiences and it is by describing the development of each of these component elements that we can describe the development of self-determination (Doll, Sands, Wehmeyer, & Palmer, 1996; Wehmeyer, Sands, Doll, & Palmer, 1997). The development and acquisition of these component elements is life-long and begins when children are very young. Some elements have greater applicability for secondary education and transition, while others will focus more on elementary years. As such, promoting self-determination as an educational outcome will require not only a purposeful instructional program, but one that coordinates learning experiences across the span of a studentÕs educational experience. Identifying the component elements and describing the development of these elements has promoted the design of instructional efforts to promote self-determination. Wehmeyer developed a student self-report measure of self-determination (Wehmeyer, 1996b) using the essential characteristics as domain areas, which enables students to self-assess instructional needs in self-determination and provides a vehicle for studentÐteacher discussions about self-determination. Other applied efforts included the identiÞcation of instructional strategies teachers can use to teach the component elements (Agran & Wehmeyer, 1999; Wehmeyer, Agran, & Hughes, 1998) and the development materials to enable students to self-direct learning related to their transition planning process (Wehmeyer & Lawrence, 1995) as well as the development of the Self-Determined Learning Model of Instruction (Wehmeyer, Palmer, Mithaug, Agran, & Martin, 2000) discussed earlier. 3. EMPIRICAL VALIDATION OF THE FUNCTIONAL MODEL The theoretical model was initially derived from focus groups of people with mental retardation and developmental disabilities (Wehmeyer, 1992b) and a comprehensive review of the pertinent literature (Wehmeyer, 1992a). To empirically test the theory, Wehmeyer and colleagues conducted a series of structured interviews with individuals with mental retardation in order to examine the contribution of essential characteristics of self-determined behavior to the achievement of behavioral outcomes closely associated with self-determination (Wehmeyer, Kelchner, & Richards, 1996). These interviews were conducted with more than 400 adults with mental retardation using a self-report measure of self-determined behavior (Wehmeyer, Kelchner, & Richards, 1995) and measures of each of the essential characteristics (Wehmeyer, Kelchner, & Richards, 1996). Upon completion of data collection activities, the sample was divided into two groups: people who scored high on the indicator of self-determination and those who scored low.

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These groups were then compared based on their self-determination scores on measures of each essential characteristic using multiple discriminant function analysis. Scores from measures of each of the four essential characteristics differed signiÞcantly based on relative self-determination grouping. In each case, individuals who were in the high self-determination group held more positive beliefs or exhibited more adaptive behaviors. In essence, the study indicated that each of the four essential characteristics were predictive of self-determination status. Measures of behavioral autonomy and self-regulation were particularly potent predictors of self-determination status. 4. RESEARCH USING THE FUNCTIONAL MODEL Research driven by this model has resulted in a wide array of Þndings with relation to self-determination and people with mental retardation. One line of research has provided evidence that adults with mental retardation and developmental disabilities are less self-determined than their peers without disabilities (Wehmeyer & Kelchner, 1994, 1995; Wehmeyer, Kelchner, & Richards 1995; Wehmeyer & Metzler, 1995; Wehmeyer & Palmer, 1997). As suggested in Fig. 1, the emergence of self-determination is based upon the enhancement of individual capacity as well as environments and supports that emphasize choice and autonomy. Another line of research has examined the impact of self-determination on the lives of individuals with mental retardation. Wehmeyer and Schwartz (1998) examined the link between self-determination and quality-of-life for adults with mental retardation. This research showed that self-determination status predicted membership in the higher quality-of-life group. Wehmeyer and Schwartz (1997) measured the self-determination of youth with learning disabilities or mental retardation prior to their graduation from high school, and their level of self-determination at that time predicted higher levels of independence, higher employment rates, and increased earnings one year out of high school. Additional research has linked self-determination issues with more effective career decision making for youth with cognitive disabilities (Wehmeyer, 1993). Third, this research has used the model to develop materials, methods, and strategies to promote self-determination, This includes a description of the development of self-determination (Doll, Wehmeyer, Sands, & Palmer, 1996; Wehmeyer, Sands, Doll, & Palmer, 1998), intervention in promoting student involvement in educational planning and decision making (Wehmeyer & Sands, 1998; Wehmeyer & Lawrence, 1995), and efforts to teach students to become more self-determined (Wehmeyer, 1995; Wehmeyer & Agran, 1999; Wehmeyer, Agran, & Hughes, 1998; Wehmeyer et al., 2000). E.

Summary

It is fair to say that, as a Þeld, we are in the early stages of understanding the construct of self-determination and its implications for individuals with mental

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Michael L. Wehmeyer

retardation. Across all four of the above cited models there is a need for additional research to provide validation of the model. As mentioned subsequently, the funding stream for research in this area has focused on model and curriculum development and there has been limited funding for research to establish a foundational knowledge. One common aspect of each model is that it applies to understanding self-determination for all individuals, not just people with mental retardation or, more accurately, not to the exclusion of people with mental retardation.

V.

RESEARCH DIRECTIONS

Research in self-determination as a personal construct is still quite limited, particularly when compared with the proliferation of instructional materials to promote this as an outcome. The rapid accumulation of such materials was a direct outcome of a 4-year funding program through the U.S. Department of EducationÕs OfÞce of Special Education, which funded a total of 26 model demonstration projects, Þve projects to develop assessment procedures in self-determination, and two projects to conduct research in student involvement in educational planning and decision making. This national effort brought the issue of self-determination to the forefront of disability policy and practice. In emphasizing model demonstration projects, however, this effort placed the proverbial cart before the horse in many ways. That is, curricular and material development proceeded without a solid foundation based on theory and research. Bruner (1966) deÞned instruction as [simply] Òaneffort to assist or to shape growthÓand theories of instruction as theories of Òhow growth and development are assisted by diverse meansÓ(p. 1). To achieve this, educators need (1) an understanding of theories of instruction and models of teaching that can drive our design of instructional techniques and educational supports and (2) an understanding of self-determination and its development and growth. It appears to be the case that in too many circumstances, we have begun curriculum and instruction design with an adequate understanding of the Þrst (instructional techniques) but an insufÞcient understanding of self-determination and its development and growth. The four models described previously can, however, serve as viable theoretical bases for future research upon which to build subsequent attempts to promote the self-determination of individuals with and without mental retardation. Almost across the board, however, there is a need to conduct additional research on the hypotheses and theoretical formulations that derive from these models overall and as they apply to people with mental retardation. Thus, there is the need to conduct research to empirically validate and test these models and the hypotheses they generate. In so doing, we can better understand both the model itself, and the putative relationships between self-determination, as conceptualized in that model, and related constructs, including quality of life, resilience, autonomy,

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self-regulation, and so forth. In addition, such research can and should begin to examine and clarify the contributions of factors outside the individual on the emergence of self-determination. Such research should examine the impact of a variety of environmental conditions on self-determination, explore the role of families on the development of self-determination, and identify instructional variables that promote or inhibit self-determination, to name just a few. A signiÞcant issue in further research is one of measurement. Currently there are a few measures of self-determination (Abery & Eggebeen, 1992a, 1992b; Wehmyer & Kelchner, 1995; Wolman, Campeau, Dubois, Mithaug, & Stolarski, 1994), yet none of these was designed to nor purports to measure all aspects of self-determination. Measurement in self-determination should share common features with empowerment evaluation, measurement in quality of life, and measurement in transition. Fetterman (1996) deÞned empowerment evaluation as Òthe use of evaluation concepts, techniques, and Þndings to foster improvement and self-determinationÓ(p. 4). Whereas many traditional assessment orientations mandate that the evaluator maintain impartiality and distance, Òempowerment evaluation has an unambiguous value orientationÑit is designed to help people help themselves and improve their programs using a form of self-evaluation and reßectionÓ(p. 5). In such a manner, assessment in self-determination will need to have a value orientation that respects and supports the role of self-evaluation and reßection. Within an empowerment evaluation framework, assessment becomes a collaborative effort, combining the input of the student and other signiÞcant parties and incorporating an evaluation of the environment. In other words, in empowerment evaluation, the focal point is individual self-evaluation and self-directed interpretation of assessment Þndings. Individuals work collaboratively with signiÞcant others to identify strengths and limitations and to chart a course for intervention. Like self-determination, quality of life is a multidimensional construct, and like measurement in quality of life, assessment will need to draw from multiple measurement techniques to best capture a valid snapshot of relative self-determination. For example, Schalock (1996) identiÞed three measurement techniques that would be needed to adequately depict a personÕs quality of life: (1) participant observation, (2) performance-based assessment, and (3) standardized instruments. Participant observation techniques involve data collectors observing what people do, listening to what they say, and frequently participating in their daily activities to get a better sense of their lives (Schalock, 1996, p. 12). This also involves use of subjective indicators, like self-report measures. Performance-based assessments refer to using objective indicators of quality of life, such as material or physical wellbeing. Standardized assessments are those that try to measure ÒglobalÓquality of life. So too will such multimethod approaches be necessary to accurately measure and describe self-determination. Current measurement tools provide too few ways

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of measuring this construct and can only provide limited information. Finally, assessment in transition, like measurement in quality of life, involves multiple approaches or techniques to assessment, including the use of standardized tests, interviews, direct observation, and criterion-referenced assessment. In addition, however, valid transition measurements are those that use multiple methods across multiple environments, including school, community, employment settings, and so forth. Measurement in self-determination should include such a cross-environment focus. Clearly this is a tall order. Some aspects of measurement in self-determination will be more important to program planning and implementation, while others are more relevant to research. However, for both research and practice in selfdetermination to move forward, we need to match the complexity of the construct with the complexity of the assessment process used to measure self-determination. Such advances should be both a part of and framed within empirically validated theoretical models of self-determination and should place increased emphasis on measurement validity and reliability. With the previous steps in place, the Þeld will be better equipped and prepared to implement services and supports that enable individuals with mental retardation to achieve enhanced self-determination and to assume greater control over their lives and destinies. However, as a Þeld we must not marginalize self-determination as a disability-only issue. That is, self-determination is a construct that has equal applicability to individuals with and without disabilities. All four of the models described earlier are applicable to understanding self-determination as a function of the human experience and condition, not just as part of the experience of disability. There is an urgent need to conduct tightly controlled and well-designed research in self-determination that does not exclude individuals with mental retardation, but examines it within the broader context of psychology and educational theory. This will be difÞcult because, historically, there has been limited application of theories pertaining to persons with mental retardation to the general population. In fact, it is of recent vintage that theories derived in typical psychology were even applied to understanding individuals with mental retardation. Switzky (1997) observed that conceptions of personality and motivational processes in persons with mental retardation prior to the 1960s Òwereonly loosely related to theoretical models derived from mainstream psychological thought, and virtually none of the available knowledge was based on any sustained systematic study of mentally retarded personsÓ(p. 343). This is certainly true of self-determination as a psychological construct which has existed for the better part of Þfty years, but has only been applied to understanding people with mental retardation in the past Þve years. However, because of the salience of self-determination and its importance to people with disabilities, it seems evident that this is an area in which research applied to mental retardation, if conducted in the context of understanding human behavior in general, might inform mainstream psychology.

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Vaughn, C. E. (1993). The struggle of blind people for self-determination: The dependencyrehabilitation conßict; empowerment in the blindness community. SpringÞeld, IL: Charles C. Thomas. Ward, M. J. (1996). Coming of age in the age of self-determination: A historical and personal perspective. In D. J. Sands & M. L. Wehmeyer (Eds.), Self-determination across the life span: Independence and choice for people with disabilities (pp. 1Ð16).Baltimore, MD: Paul H. Brookes. Warren, B. (1993). The right to choose: A training curriculum. New York: New York State OfÞce of Mental Retardation and Developmental Disabilities. Wehmeyer, M. L. (1992a). Self-determination and the education of students with mental retardation. Education and Training in Mental Retardation, 27, 302Ð314. Wehmeyer, M. L. (1992b). Self-determination: Critical skills for outcome-oriented transition services. The Journal for Vocational Special Needs Education, 39, 153Ð163. Wehmeyer, M. L. (1993). Perceptual and psychological factors in career decision-making of adolescents with and without cognitive disabilities. Career Development for Exceptional Individuals, 16, 135Ð146. Wehmeyer, M. L. (1995). A career education approach: Self-determination for youth with mild cognitive disabilities. Intervention in School and Clinic, 30, 157Ð163. Wehmeyer, M. L. (1996a). Self-determination as an educational outcome: Why is it important to children, youth and adults with disabilities? In D. J. Sands & M. L. Wehmeyer (Eds.), Self-determination across the life span: Independence and choice for people with disabilities (pp. 15Ð34).Baltimore, MD: Paul H. Brookes. Wehmeyer, M. L. (1996b). A self-report measure of self-determination for adolescents with cognitive disabilities. Education and Training in Mental Retardation and Developmental Disabilities, 31, 282Ð293. Wehmeyer, M. L. (1997). Self-determination as an educational outcome: A deÞnitional framework and implications for intervention. Journal of Developmental and Physical Disabilities, 9, 175Ð 209. Wehmeyer, M. L. (1998). Self-determination and individuals with signiÞcant disabilities: Examining meanings and misinterpretations. Journal of the Association for Persons with Severe Handicaps, 23, 5Ð16. Wehmeyer, M. L., Agran, M., & Hughes, C. (1998). Teaching self-determination to youth with disabilities: Basic skills for successful transition. Baltimore, MD: Paul H. Brookes. Wehmeyer, M. L., Agran, M., & Hughes, C. (2000). A national survey of teachersÕpromotion of self-determination. Journal of Special Education. 34, 58Ð68. Wehmeyer, M. L., & Bolding, N. (2000). Enhanced self-determination of adults with mental retardation as an outcome of moving to community-based work or living environments. Manuscript submitted for publication. Wehmeyer, M. L., & Bolding, N. (1999). The impact of living and working environments on the self-determination of adults with mental retardation. Mental Retardation, 37, 353Ð363. Wehmeyer, M. L., & Kelchner, K. (1994). Interpersonal cognitive problem-solving skills of individuals with mental retardation. Education and Training in Mental Retardation and Developmental Disabilities, 29, 265Ð278. Wehmeyer, M. L., & Kelchner, K. (1995). Measuring the autonomy of adolescents and adults with mental retardation: A self-report form of the Autonomous Functioning Checklist. Career Development for Exceptional Individuals, 18, 3Ð20. Wehmeyer, M. L., & Kelchner, K. (1995). The ArcÕs Self-Determination Scale. Arlington, TX: The Arc of the United States. Wehmeyer, M. L., Kelchner, K., & Richards, S. (1995). Individual and environmental factors related to the self-determination of adults with mental retardation. Journal of Vocational Rehabilitation, 5, 291Ð305.

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Wehmeyer, M. L., Kelchner, K., & Richards, S. (1996). Essential characteristics of self-determined behaviors of adults with mental retardation and developmental disabilities. American Journal on Mental Retardation, 100, 632Ð642. Wehmeyer, M. L., & Lawrence, M. (1995). Whose future is it anyway? Promoting student involvement in transition planning. Career Development for Exceptional Individuals, 18, 69Ð83. Wehmeyer, M. L., & Metzler, C. A. (1995). How self-determined are people with mental retardation? The National Consumer Survey. Mental Retardation, 33, 111Ð119. Wehmeyer, M. L., & Palmer, S. B. (1997). Perceptions of control of students with and without cognitive disabilities. Psychological Reports, 81, 195Ð206. Wehmeyer, M. L., Palmer, S., Agran, M., Mithaug, D., & Martin, J. (2000). Promoting causal agency: The Self-Determined Learning Model of Instruction. Exceptional Children, 66, 439Ð453. Wehmeyer, M. L., & Sands, D. J. (1998). Making it happen: Student involvement in education planning, decision making and instruction. Baltimore, MD: Paul H. Brookes. Wehmeyer, M. L., Sands, D. J., Doll, B., & Palmer, S. B. (1997). The development of self-determination and implications for educational interventions with students with disabilities. International Journal of Disability, Development, and Education, 44, 212Ð225. Wehmeyer, M. L., & Schwartz, M. (1997). Self-determination and positive adult outcomes: A followup study of youth with mental retardation or learning disabilities. Exceptional Children, 63, 245Ð255. Wehmeyer, M. L., & Schwartz, M. (1998). The relationship between self-determination, quality of life, and life satisfaction for adults with mental retardation. Education and Training in Mental Retardation and Developmental Disabilities, 33, 3Ð12. Werner, H., & Kaplan, B. (1965). Symbol formation. Hillsdale, NJ: Erlbaum. West, M. D., & Parent, W. S. (1992). Consumer choice and empowerment in supported employment services: Issues and strategies. Journal of the Association for Persons with Severe Handicaps, 17, 47Ð52. White, R. W. (1959). Motivation reconsidered: The concept of competence. Psychological Review, 66, 297Ð333. Whitman, T. L. (1990). Self-regulation and mental retardation. American Journal on Mental Retardation, 94, 347Ð362. Williams, R. R. (1989). Creating a new world of opportunity: Expanding choice and self-determination in lives of Americans with severe disability by 1992 and beyond. In R. Perske (Ed.), Proceedings from the National Conference on Self-Determination (pp. 16Ð17).Minneapolis, MN: Institute on Community Integration. Wolfensberger, W. (1972). Normalization: The principle of normalization. Toronto: National Institute on Mental Retardation. Wolman, B. B. (1973). Dictionary of behavioral science. New York: Van NostrandÑReinhold. Wolman, J., Campeau, P., Dubois, P. A., Mithaug, D. E., & Stolarski, V. S. (1994). AIR SelfDetermination Scale and User Guide. Stanford, CA: American Institutes on Research. Zimmerman, M. A. (1990). Toward a theory of learned hopefulness: A structural model analysis of participation and empowerment. Journal of Research in Personality, 24, 71Ð86. Zimmerman, M. A., & Rappaport, J. (1988). Citizen participation, perceived control, and psychological empowerment. American Journal of Community Psychology, 16, 725Ð750.

International Quality of Life: Current Conceptual, Measurement, and Implementation Issues KENNETH D. KEITH DEPARTMENT OF PSYCHOLOGY UNIVERSITY OF SAN DIEGO SAN DIEGO, CALIFORNIA

I.

INTRODUCTION

A decade ago, Schalock (1990a) predicted that quality of life would become Òthe issue of the 1990sÓ(p. x) in the Þeld of intellectual disability, despite reservations of the sort expressed by Luckasson (1990), who feared the quality-of-life movement would prove dangerous and perhaps lead to denial of basic life necessities for people with disabilities. Research on the topic subsequently expanded rapidly: Cummins (1995) reported that over 100 deÞnitions exist for quality of life; Antaki and Rapley (1996) found 1400 references to quality of life in the psychological literature from 1992 to 1995; and Hughes, Hwang, Kim, Eisenman, and Killian (1995) identiÞed more than 1000 individual measures of various aspects of quality of life. Certainly, researchers responded to LandesmanÕs (1986) challenge to address the issues of deÞnition and measurement of quality of life, and the notion has shown a degree of persistence and acceptance that prompted Luckasson (1997) to say ÒIam beginning to change my mind: The phantom of quality of life/happiness, as a guide to good, may be absolutely appropriate, and maybe even a right.Ó(p. ix). This is not to say that questions about the utility of the construct of quality of life do not remain (Hatton, 1998), but there can be no doubt that Schalock (1990a) was right in predicting its importance as an issue for the decade. Fears regarding the utility of the concept of quality of life and the wisdom of its widespread study and use were not without foundation. For example, economic rationalism, with a focus on costÐbeneÞtrelationships and an effort to quantify the value of a more or less healthy life, might lead to denial of medical treatment to INTERNATIONAL REVIEW OF RESEARCH IN MENTAL RETARDATION, Vol. 24 0074-7750/01 $35.00

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individuals with disabilities (The Association for Persons with Severe Handicaps, 1984; Parmenter, 1996). Taylor and Bogdan (1996) reported a study (Gross, Cox, Tatyrek, Pollay, & Barnes, 1983) embodying a formula to determine quality of life for decision making in treatment of infants with disabilities, and Brown (2000) described the relationship between quality-of-life values and economic rationalism as a collision course. To date, however, the effect of such efforts to quantify the value of life seems limited to the Þeld of medical economics and has in fact been opposed by advocates for people with disabilities (Parmenter, 1996). Goode (1997) advocated an approach to policy making that would exclude use of quality of life as a mechanism for determining eligibility for treatment or services and noted agreement among researchers that the study of quality of life of people with disabilities should not be separated from that of individuals without disabilities. With regard to the latter point, a number of commentators (e.g., Goode & Hogg, 1994, 1997; Keith, 1990; Kozleski & Sands, 1992; Schalock & Keith, 1993) have discussed the importance of connecting quality of life of persons with developmental disabilities to that of other citizens in an effort to assure integration and enjoyment of community life by individuals with disabilities. In this context of increasing acceptance, proliferating research, and widespread use of the quality of life construct, I discuss an emerging international consensus on conceptualization, measurement, and application. Clearly, quality of life is an idea that is increasingly recognized as culturally divergent, international in scope, and multidimensional in its nature. Thus, its deÞnition and measurement have been, as Landesman (1986) expected, replete with disagreement and difÞculty. Nevertheless, some agreement has gradually formed around its key dimensions, some principles (and problems) underlying its measurement are broadly accepted, and some trends and themes likely to inßuence future application and understanding of quality of life can be identiÞed.

II.

CONCEPTUALIZING QUALITY OF LIFE

DeÞning and conceptualizing quality of life has been, and remains, a complex process that presents numerous technical and philosophical problems. This state of affairs prompted Schalock (1996) to suggest that we are better off not with a deÞnition of quality of life, but rather with an agreement to think of quality of life as an organizing conceptÑa notion that might give guidance to service development and to evaluation of core dimensions associated with itÑand Parmenter (1992) voiced the fear that quality of life might lose its true meaning in the search to operationalize it and make it into public policy. Goode (1997) presented seven exemplary deÞnitions chosen from worldwide literature and observed that they had in common three characteristics noted earlier by Schalock, Bartnik, Wu, Konig, Lee, and Reiter (1990): general feelings of well-being, opportunities to fulÞll

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potential, and feelings of positive social involvement. Goode (1997) also noted, however, the tendency of some researchers to believe that quality of life cannot be precisely deÞned or measured. Currently, researchers are less likely to attempt to speciÞcally deÞne quality of life than to study its various facets and factors, although it must be acknowledged that this effort also inevitably imposes a de facto working deÞnition of the concept. A.

The Objectivity–Subjectivity Question

A long history of traditional belief held that objective factors, and in particular elimination of poverty through improved economic status, would enhance personal well-being (Campbell, Converse, & Rodgers, 1976). However, for general populations the correlation between income and sense of well-being is modest (Myers, 1992, 2000), and in the Þeld of intellectual disabilities the best evidence seems to suggest that the individual experience of quality of life involves both the objective conditions to which an individual is exposed and the subjective perceptions of the person in interpreting those objective factors (Keith, 1996). Recognition of this fact led Campbell et al. (1976) to observe that ÒThereis not much doubt that the central issue confronting any examination of the perceived quality of life involves the relationship between subjective and objective indicators of well-beingÓ (p. 474). Edgerton (1996), though, questioned the nature of the relationship between objective and subjective factors and cautioned that, at least for some people, the subjective perception of well-being may not be closely linked to objective standards of quality. The nature of the relationship between the objective and the subjective, Edgerton asserted, is a rather difÞcult empirical question. Goode (1997) proposed a conceptual model for research that might link objective and subjective approaches via a cooperative qualitative-quantitative framework, while noting that although the idea is good, Òthedevil is in the detailsÓ(p. 217). Parmenter (1992) reviewed several studies that could be interpreted in support of EdgertonÕs (1996) view, revealing variable and often low correlations between objective and subjective indicators of quality of life. There is no clear objective standard by which to assess quality of life, and researchers seem agreed that subjective assessment of individual perceptions of life experiences in such areas as relationships, community activity, physical and material well-being, and personal development (Flanagan, 1978; 1982), as well as subjective views of satisfaction and happiness (Abbey & Andrews, 1986; Myers, 1992), must also be taken into account. On the other hand, there are some potentially serious problems with current efforts to assess subjective quality of life (Hatton, 1998), and researchers must take these concerns seriously. Hatton identiÞed three major problems with assessment of subjective aspects of quality of life: the difÞculty in interviewing individuals who lack communication skills; the different meanings attributed to quality of life interviews by different individuals; and the concern, expressed previously by

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Edgerton (1990, 1996), that subjective well-being may be as much a product of individual disposition or personality as of discernible changes in life circumstances. Felce (1996; Felce & Perry, 1996) proposed a three-part model that attempts to integrate objective description of life conditions and subjective assessment of satisfaction with a third dimensionÑpersonal values and aspirations. The importance of personal values was previously recognized by Flanagan (1978); more recently by Renwick, Brown, and Raphael (2000); and in the weighting of ratings of life experience in generic populations by Campbell, Converse, and Rodgers (1976) and among people with disabilities by Cummins (1993). One could argue, of course, that such inßuences as personal values are simply another feature of the subjective dimension, just as Rapley (2000) asserted the contribution of social relationships to estimates of subjective well-being. Perhaps the key point of consensus here is that no current writer fails to include a subjective dimension in any formulation of quality of life, and typical models (e.g., Cummins, 1999) present subjective quality of life as their central outcome. B.

The Search for Core Dimensions

In an effort to move beyond the objectiveÐsubjective debate, Schalock (1996) suggested a move to consensus on core quality of life dimensions that might be measured in various ways (e.g., participant observation, performance-based assessment, and standardized instruments). However, the concept of quality of life exists in an increasingly cross-cultural psychological environment (Heal, Schalock, & Keith, 1992; Keith, 1996; Keith, Yamamoto, Okita, & Schalock, 1995) in which important dimensions of human experience are linked closely to cultural inßuences (Markus & Kitayama, 1991). There is thus potential for broad (but possibly unfounded) cross-cultural generalization (Brislin, 1993) in identiÞcation of core dimensions, and values, an important foundation for quality of life, mightÑlik e other psychological conceptsÑv ary signiÞcantly from one culture to another (Feather, 1994). Keith, Heal, and Schalock (1996) investigated the possibility of cross-cultural agreement on the meaning of critical quality of life concepts by asking persons working in the Þeld in seven different cultures (Australia, England, Finland, Germany, Japan, Taiwan, and the United States) to evaluate aspects of the meaning of 10 such concepts. The concepts were selected by review of literature reßecting opinions of people with disabilities, accreditation standards, and world literature on quality of life measurement. The 10 concepts were (1) rights, (2) relationships, (3) satisfaction, (4) environment, (5) economic security, (6) social inclusion, (7) individual control, (8) privacy, (9) health, and (10) growth and development. A semantic differential technique similar to that used by Osgood, May, and Miron (1975) was used to ask participants to rate the concepts on dimensions

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(value, potency, and activity) that were found by Osgood et al. to be near-universal across 22 languages. Keith et al. found a surprising level of agreement in the ratings of the 10 concepts across the seven countries. All the countries (except Japan) showed similar patterns in the ratings, and all the countries (including Japan) assigned positive ratings (on at least some dimensions) to all the concepts. These quality of life concepts were sufÞciently robust and universal to receive strong cross-cultural validation by a diverse group of persons working in the Þeld. Further, in a different, but related, effort, Heal (1996) analyzed the contents of GoodeÕs (1994) book on international perspectives and issues in quality of life and found that these concepts were addressed by numerous writers from a variety of cultural backgrounds. The central importance of the individual perspectives of people with disabilities (and other nonresearchers) has been recognized by a wide variety of workers (e.g., Felce, 1996; Goode & Hogg, 1994; Keith, 1990; Renwick & Brown, 1996; Renwick, Brown, & Raphael, 2000; Taylor & Bogdan, 1996), in several countries, and major projects have been undertaken to solicit the input and participation of nonresearchers in conceptualizing and measuring quality of life (e.g., Bonham et al., 1998; The ARC of Nebraska, 1998). Felce (1996) proposed that the structure of quality of life domains should meet two criteria: (1) in recognition of the complexity of life they must reßect the possibility of a multielement, multifocal approach to assessment; and (2) they must generally reßect a broad knowledge of those things important to us all. Felce went on to suggest six possible domains: physical well-being, material well-being, social well-being, productive well-being, emotional well-being, and rights or civic well-being. Felce acknowledged the overlap of this list with domains proposed by others and noted the considerable level of agreement among researchers on this point. Internationally, consensus has developed (e.g., Carbonell, 1999; Felce, 1996; Hatton, 1998) around a model proposed by Schalock (1996), conceptualizing quality of life in terms of eight core dimensions: (1) emotional well-being, (2) interpersonal relations, (3) material well-being, (4) personal development, (5) physical well-being, (6) self-determination, (7) social inclusion, and (8) rights. Schalock (1996) argued that these dimensions were both empirical and experiential, that they would lend themselves to multiple approaches to measurement, that each could be examined via multiple exemplary indicators, and that such an approach would help to break down the distinction between objective and subjective indicators of quality of life. Hughes et al. (1995), in a comprehensive review of literature, proposed a somewhat lengthier list of dimensions for a consensus model of quality of life. However, when speciÞc social indicators (employment, recreation, supports, etc.) are separated (as they are in the Schalock model), the remaining dimensions overlap virtually totally with SchalockÕs (1996) list. I should note that, while certain of these dimensions (e.g., self-determination and

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rights) might not have been seen as central in traditional work on quality of life and well-being of people without disabilities (e.g., Flanagan, 1978), recent work (e.g., Diener & Suh, 1999; Ryan & Deci, 2000) sheds new light on the generic nature of their contribution. C.

Quality of Life as Construct

Quality of life has been construed by some as an Òinner senseÓ (Taylor & Bogdan, 1996); as a correlate of temperament or personality (Edgerton, 1996); as a construct sensitive to anthropological, sociological, and psychological inßuences (Brown, 2000); and as an interactional product of person and environment (Rapley, 2000). The nature of the quality of life construct, as opposed to a simple deÞnition, is important in the research literature for a central compelling reason: If, as Edgerton (1996) has suggested, Ò. . .features of a personÕs environment are less important in bringing about a sense of well-being than are aspects of that personÕs personality or temperamentÓ (p. 88), the response of the Þeld might be quite different than if Schalock (1997a) was correct when, in identifying the best predictors of quality of life, he noted that these Ò. . .are factors that programs can do something aboutÓ(p. 252). And Edgerton (1996), despite his caution that environmental change may not change quality of life, nevertheless identiÞed a list of improvements (e.g., housing, health care, employment, recreation) that any society should provideÑa list very much like quality of life predictors enumerated by Schalock (1997a). Thus, while there may be disagreement on the relative weight of individual versus environmental contributors to quality of life, the importance of improving environmental situations for individuals with disabilities is not in dispute. Meanwhile, research continues in areas aiming to illuminate the relationship between personal disposition and various aspects of personal well-being. Although estimates of the genetic contribution to well-being (as seen in personality) vary, it seems reasonable to conclude that it may account for roughtly 50% of the variance (cf. Diener, Suh, Lucas, & Smith, 1999). As efforts are made to improve the situation of people with disabilities, quality of life is viewed in at least three important ways (Keith & Schalock, 2000): (1) as a sensitizing notion that provides reference and guidance, with focus on the individual and the individualÕs environment; (2) as a social construct useful in improving individualsÕperceived well-being; and (3) as a unifying theme providing a systematic framework within which to view work aimed toward improving the lives of individuals. This conception is consistent with the understanding of quality of life as rooted in individual perspectives, encompassing perception of disability and the role of service delivery (Brown, Brown, & Bayer, 1994), and with the notion that quality of life provides a useful context for planning and evaluation of services (Dennis, Williams, Giangreco, & Cloninger, 1993).

INTERNATIONAL QUALITY OF LIFE

III.

55

MEASURING QUALITY OF LIFE

The complexity of the problem of deÞning and conceptualizing quality of life foreshadows an equally difÞcult challenge in measurement. Efforts to measure quality of life go back as least as far as Thorndike (1939), and the number of studies published in the area of disabilities has increased in recent years (Hughes et al., 1995). The concept is elusive (Felce & Perry, 1995), multifaceted (Parent, 1992), and fraught with problems (Campbell et al., 1976). A variety of objective measures has been employed in estimating quality of life of individuals with intellectual disabilities (Perry & Felce, 1995), and many researchers have used interviews or questionnaires of various sorts (e.g., Brown et al., 1994; Hughes et al., 1995; Koide et al., 1996; Ouellette-Kuntz, 1990; Schalock & Keith, 1993). SpeciÞc techniques have included multidimensional scales, ethnographic studies of individual lives, discrepancy analysis, and direct behavioral data collection efforts. I brießy review representative work utilizing each of these approaches, and then go on to comment on signiÞcant measurement issues noted by Raphael (1996). A.

Multidimensional Scales: Examples, Issues, and Challenges

As I have shown earlier in this chapter, investigators are agreed that quality of life is an entity constructed of multiple dimensions. This fact has prompted writers (Brown et al., 1994; Heal, Borthwick-Duffy, & Saunders, 1996; Schalock, 1996) to recognize the utility of multifactored approaches to assessment, and these approaches have of course been accompanied by a number of measurement issues and challenges associated with such procedures. 1. EXAMPLES OF SCALES Although efforts to assess quality of life of other populations predated development of instruments for use in intellectual disabilities, Heal and Chadsey-Rusch (1985) produced an early multidimensional scale (The Lifestyle Satisfaction Scale) for such use. The Lifestyle Satisfaction Scale had four subscales: Community Satisfaction, Friends and Free Time Satisfaction, Satisfaction with Services, and General Satisfaction. The Scale was later revised and expanded to include such additional dimensions as job satisfaction, recreation and leisure, and satisfaction with interpersonal interactions (Harner & Heal, 1993; Heal, Rubin, & Park, 1995), and speciÞc adaptations have been developed for particular purposes (e.g., Hawkins, Kim, & Edlund, 1995). Keith, Schalock, & Hoffman (1986) developed the Quality of Life Questionnaire (QOL.Q), an early instrument that measured individual responses in three factors: Environmental Control, Community Involvement, and Social Relations.

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The QOL.Q was subsequently revised, with the most recent revision (Schalock & Keith, 1993) incorporating four scales: Satisfaction, Productivity, Empowerment, and Social Belonging. Another early effort to produce a multidimensional quality of life scale was that of Cummins (1991), who developed the Comprehensive Quality of Life ScaleÑ Intellectual Disability (ComQol-ID), an instrument with seven scales: Material Things, Physical Well-Being, Productivity, Intimacy, Safety, Place in Society, and Emotional Well-Being. This instrument has also been revised several times (e.g., Cummins, 1997). Both the QOL.Q and the ComQol-ID have been widely used in several countries by researchers investigating quality of life of people with intellectual disability, and tentative efforts have been made to study the crosscultural utility of such instruments (e.g., Keith, 1996; Keith, Yamamoto, Okita, & Schalock, 1995; Rapley & Lobley, 1995). A multidimensional instrument developed to assess quality of life of individuals with severe developmental disabilities is the Quality of Life Interview Schedule (QUOLIS) (Oullette-Kuntz & McCreary, 1996). The QUOLIS was designed to utilize proxy respondents as informants on behalf of people who cannot themselves participate directly in an interview and samples 12 life domains: health services, family guardianship, income maintenance, education-employment, housing and safety, transportation, social-recreational, religious-cultural, case management, advocacy, counseling, and aesthetics. There are, of course, other multidimensional instruments developed to measure quality of life. Schalock (1996), for example, compiled a list of such assessment instruments, including work by the researchers cited here (Cummins, 1993; Harner & Heal, 1993; Schalock & Keith, 1993) as well as additional scales by Brown, Bayer, and McFarlane (1989); Evans, Burns, Robinson, and Garrett (1985); Halpern, Nave, Close, and Nelson (1986); and Keith and Schalock (1995). 2. MEASUREMENT ISSUES AND CHALLENGES Psychometric instruments purporting to measure quality of life must, of course, meet appropriate psychometric criteria (reliability, validity, and standardization) (Cheng, 1988; Harner & Heal, 1993; Hawkins, Kim, & Eklund, 1995; OulletteKuntz, 1990; Schalock, 1996). However, additional issues are perhaps even more fundamentally challenging to measurement in this realm. Some of these include the problems arising (1) when individuals cannot respond on their own behalf to questionnaires or interviewing procedures (Borthwick-Duffy, 1990; Campo, Sharpton, Thompson, & Sexton, 1996; Dennis et al., 1993), (2) when personal values might indicate the need for individual weighting of the components of measured quality of life (Felce & Perry, 1995), and (3) when the central notion of measurement of quality of life is called into question (Taylor, 1994). a. The Informant/Proxy Problem. A number of researchers, including Brown, Brown, and Bayer (1994); Campo et al. (1996); Felce and Perry (1995); Keith and

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Schalock (1995); Oullette-Kuntz and McCreary (1996); and Schalock and Keith (1993) have recognized the difÞculty inherent in obtaining individual quality of life data or views from individuals with severe or profound intellectual disabilities or other conditions inhibiting communicative capacity. Family members, advocates, or other individuals well acquainted with the life of the target individual have sometimes been enlisted as proxy informants, and some instruments (e.g., Keith & Schalock, 1995; Keith, Schalock, & Hoffman, 1986; Schalock & Keith, 1993) have been calibrated, reporting interrater agreements between informants and individuals with disabilities who are verbal. However, these writers, as well as numerous others (Brown, Brown, & Bayer, 1994; Cummins, 1992; Felce & Perry, 1995; Goode & Hogg, 1994; Hatton, 1998; Rapley & Beyer, 1996) have recognized the difÞculties and dangers inherent in entrusting judgments about quality of life to surrogates, proxies, or other informants. Second-party ratings may not accurately reßect the views of the individual (Goode & Hogg, 1994; Heal & Sigelman, 1990; Stancliffe, 1995), and agreements tend to be lower for those domains that require more subjective judgments (Schalock, Keith, & Hoffman, 1990). Nevertheless, at least one instrument, the QUOLIS (Ouellette-Kuntz & McCreary, 1996), relies heavily upon proxy reports in assessing quality of life of individuals whom the authors feel cannot be interviewed, despite acknowledging the advice of Patrick and Erickson (1993) against the practice, particularly in subjective domains. The proxy problem remains a dilemma, and it requires more research. While interviews with individuals with signiÞcant intellectual disabilities are difÞcult and of questionable reliability (Felce & Perry, 1995), the research on informants is also problematic (Cummins, 1992). Useful investigation in this area will likely include study of characteristics of informants that might make them better ÒwitnessesÓ(Cummins, 1992), and investigation of more nearly objective quality-oflife dimensions such as direct observation of engagement in meaningful activity (Felce, 2000). At any rate, as Ouellette-Kuntz and McCreary (1996) argued, ÒTo do nothing because of uncertainty will not advance our understandingÓ(p. 273). b. The Role of Personal Values. In development of the ComQol-ID, Cummins (1991) highlighted the hierarchical nature of human needs, suggesting that qualityof-life domains should be ordered in importance by each individual in a manner consistent with personal values. Renwick and Brown (1996), in a discussion of assumptions underlying their conceptual model of quality of life, also advocated the importance of taking into account the values (along with cognitions, beliefs, and interests) of the individual. As I noted brießy earlier, Felce (1996), in elaborating a quality-of-life model, included not only the subjective and objective dimensions, but also a dimension incorporating personal values and aspirations (deÞned as the relative weights given by the individual to the objective and subjective factors)Ñ which, when added to the subjective and objective factors, would produce overall well-being (quality of life).

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However, not all multidimensional measures of quality of life attempt to weight personal values in a systematic way. For example, neither the QOL.Q (Keith, Schalock, & Hoffman, 1986; Schalock, Keith, & Hoffman, 1990; Schalock & Keith, 1993) nor the QUOLIS (Ouellette-Kuntz, 1990; Ouellette-Kuntz & McCreary, 1996) refer explicitly to the role of personal values, except to the extent that personal views are reßected in responses to subjective questionsÑa procedure different from the actual assignment of differential weights to domains based upon the individualÕs perception of their importance. This is not to say, however, that these writers are not concerned with values. In fact, although researchers have taken different paths with regard to the role of personal values and their weight in quality of life measurement, there seems to be no disagreement on the importance of fundamental values and principles to quality of life research in the Þeld of intellectual disabilities. Raphael (1996) provided a particularly cogent discussion of this issue, pointing out that while quality-of-life researchers in some Þelds have attempted to create theoretical models devoid of value statements, those working in developmental disabilities have nearly always made explicit statements of underlying values. These statements generally indicate the importance of meeting individual needs; the similarity of quality of life for individuals with and without disabilities; the role of personal opportunity associated with home, work, and community; and the need for personal growth and development (Raphael, 1996). Thus, researchers studying quality of life of people with developmental disabilities, perhaps unlike some (e.g., the economic rationalists) studying it in other realms, would seem to agree with Edgerton (1991a) in his assertion that individuals concerned with the well-being of those with mental retardation Ò. . .should recognize that what they value in their lives has an intrinsic worth and do what we can to protect their freedom to choose or maintain what they valueÓ(p. 273). Still, the question remains whether either objective or subjective measures of quality of life have meaning and are interpretable without knowledge of the value placed on them by the individual in his/her particular context (Felce & Perry, 1995), and efforts continue (e.g., Cummins, 1997) to make personal values a meaningful factor in quality of life measurements. c. Viability of Measurement. Taylor (1994) made a distinction between Òquality of lifeÓas a sensitizing concept and ÒQOLÓas a deÞnitive concept. Taylor quoted Blumer (1969) in pointing out that a sensitizing (unlike a deÞnitive) concept, rather than providing a clear deÞnition, simply offers general guidance or direction for study. In transforming quality of life to QOL, Taylor suggested, it may be reduced to precision at the expense of meaning and may produce a Òtyranny of QOLÓthat prescribes lifestyles and limits personal freedom and satisfaction. ÒThe good life,Óhe concluded, Òshouldnot be reduced to the good life scaleÓ(p. 264). Edgerton (1990) sounded a similar warning in criticizing the ÒAmerican passion for reducing complex qualitative concepts to simple scalar instrumentsÓ(p. 150). EdgertonÕs concerns, like those of Taylor (1994), included the fear that quality

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of life scales might result in measures that would prompt imposition of speciÞc life standards or expectations on the lives of individuals. Edgerton went on to describe examples of people living quite happily in circumstances that others might, according to some quality of life Òstandard,Óconsider unacceptable or even deplorable. These issues raise the kinds of moral questions about implications of quality-of-life measurement that prompted Wolfensberger (1994) to suggest rejection of quality of life as a ÒhopelesstermÓ(p. 285). In a discussion of problems associated with assessment of quality of life, Hatton (1998) articulated the inherent tension existing between quality-of-life theory that focuses on the individualized nature of the concept and the need, for measurement purposes, to produce standardized measures of quality of life. Key aspects of this paradox were laid out in great detail by Antaki and Rapley (1996) in their discussion of the inconsistency between speciÞc, formal, ÒofÞcialÓstandardized quality-of-life assessment and the more general, informal, nonpsychometric approaches that might be more often used to simply ask people whether they are happy with their lives. Researchers may be well advised to consider the likelihood that quality of life should be more broadly (rather than narrowly) conceptualized, that it is a multidimensional construct, that it is reßected in multiple indicators and measurement techniques, and that it is interpreted in individual (not normative) experience (Schalock, 1996). B.

Ethnographic Studies

Edgerton (1990) and his colleagues have carried out a long-running program of longitudinal research aimed toward naturalistic, unobtrusive observation and understanding of the lives of people with mental retardation in natural contexts and through their own eyes. This work has been conducted by anthropologists and has not utilized the kinds of psychometric or interview techniques described in the previous sections (Edgerton, 1991b). Edgerton (1996) has advocated prolonged contact with people in the context of their ongoing lives and at more or less unpredictable intervals, all with the aim of enhancing a richer, fuller understanding of the reality of life satisfaction. This approach has produced detailed personal accounts of the lives of individuals, often reported in the voices of the people themselves (e.g., Edgerton & Gaston, 1991). Although their methods were somewhat different from those of Edgerton and his colleagues, Taylor and Bogdan (1984) demonstrated the utility of qualitative approaches to the study of individual lives in natural settings. While their visits with people have perhaps been less extensive than those of EdgertonÕs group, these researchers have given intensive focus to the lives of individuals, sometimes spending several days studying their life circumstances and the perceptions of those around them in an effort to illuminate their relationships and life circumstances (Bogdan & Taylor, 1989).

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These qualitative studies have raised interesting questions about the nature of quality of life as a construct and as a dimension of personal experience. Is it, for example, as Edgerton (1990, 1996) suggested, as much a function of temperament as of environment? How does it relate to morality, duty, social responsibility, and other aspects of ongoing social life (Taylor, 1994)? Does a sense of stability of general life satisfaction occur naturally with age and maturity (Edgerton, 1996)? Questions like these will continue to be important as research on quality of life continues; a variety of research methods will be useful in their exploration, and approaches that immerse investigators in the reality of ongoing lives will be essential to a meaningful understanding. C.

Discrepancy Analysis

However it is measured or conceptualized theoretically, a critical aspect of quality of life is the goodness of Þt between individual needs and personal satisfaction of those needs (Heal et al., 1996; Schalock & Jensen, 1986) or, to put it another way, the nature of the personÐenvironment Þt (Parmenter, 1992). Earlier writers (e.g., Land & Spilerman, 1975; Liu, 1976; Milbrath, 1979) suggested the potential utility of quality-of-life measures in identifying unmet needs among various populations, with the implication that resource allocation might be inßuenced by such data. The implicit assumption, of course, is that a better personÐenvironment Þt would indicate better quality of life (Schalock, Keith, Hoffman, & Karan, 1989). More recently, Heal et al. (1996) emphasized not only the goodness-of-Þt criterion in their discussion of a discrepancy model, but also the role of personal competence, choice, and control as key aspects of satisfaction and quality of life. Thus, while quality of life may be inßuenced by the personÐenvironment Þt, a key part of that Þt may be the ability of the environment to support the skills and personal control required for the individual to minimize discrepancies between needs and aspirations (Heal et al., 1996). This view is consistent with the Þndings of Wehmeyer and Schwartz (1998), who found quality-of-life scores positively correlated with self-determination scores among 50 adults living in community group homes. It is also consistent with the assertions of Felce (1996) and Parmenter (1992) that personal values and aspirations must be a part of the quality-of-life equation. At least one model (Murrell & Norris, 1983) has been proposed that would make quality of life the essential criterion for determining the personÐenvironment Þt. This perspective, if individual values and aspirations are truly honored, would seem to avoid the so-called Òtyranny of QOLÓ(Taylor, 1994) and might have signiÞcant implications for social policy (Dennis et al., 1993; Schalock et al., 1989). Qualityof-life policy, in this context, could aim to minimize the gap between individual perceptions of life conditions and desired conditions (Goode, 1997), and it should be reßected in a public philosophy that recognizes that quality of life for citizens with disabilities is linked to that of all a nationÕs citizens (Turnbull & Brunk, 1997).

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D.

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Direct Behavioral Measures

In addition to the various measures of quality of life that I have noted in the previous sections, some writers have used a number of approaches to behavioral observation as an indicator of quality of life. McGill, Emerson, and Mansell (1994), for example, reported changes in challenging behaviors as an indicator of improved quality of life for individuals moving from institutional to community settings. Rawlings (1985) also reported direct observations of a number of behaviors, including engagement in ÒappropriateÓactivity and social interactions, as correlates of such entities as personal freedom and autonomy in community homes. Generally similar Þndings were reported by Rapley and Hopwood (1997), who found signiÞcant correlations between quality of life measures and the Index of Participation in Domestic Life (Raynes, Sumpton, & Pettipher, 1989). In recognition of the importance of support services as contributors to lifestyles (Felce & Perry, 1996), Jones et al. (1997) investigated the effects of staff training in active support in community housing. Active support involves staff members in a planning process directed toward allocating their time and effort toward involving consumers with disabilities in meaningful activities and in being responsive to the activity preferences of individuals. Such activity is, of course, subject to systematic observation and has been shown to contribute to quality of life of people with significant developmental disabilities (Felce, 2000), as have other programmatic changes associated with improved adaptive behavior (Felce, Lowe, & de Paiva, 1994). Perhaps the greatest challenge facing researchers using behavioral measures as an indicator of quality of life will be to chart a course that demonstrates the distinctive contribution of such measures to an understanding of quality of life. This will be necessary in order to avoid the traps described by Wolfensberger (1994) in his criticism of uses of the term Òqualityof lifeÓthat are so generic and indiscriminate as to become meaningless.

E.

Critical Measurement Issues

This brief review of some of the key points of view taken by researchers attempting to measure quality of life provides a taste of the variety of approaches and the complexity of the resultant problems that exist in the Þeld. Raphael (1996) presented a cogent discussion of 11 ÒdebatesÓthat arise in the context of quality of life measurement: (1) sociological versus psychological perspectives; (2) positivist, idealist, and realist approaches; (3) naturalistic versus positivist methodologies; (4) quantitative versus qualitative methods; (5) values-based versus values-free approaches; (6) social policy versus basic research orientations; (7) system versus individual data collections; (8) objective versus subjective measurements; (9) selfreports versus reports by others; (10) traditional versus participatory approaches; and (11) critical (activist) approaches.

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The ways in which researchers articulate and use (or ignore) these issues will deÞne future work in quality of life. I have discussed some of them in the foregoing sections and comment brießy here on some others. While continuing to focus on the interests and the rights of individuals, quality of life work in developmental disabilities nevertheless seems to be increasingly sociological (i.e., group-oriented) and social policy-oriented. For example, one recent edited volume (Schalock, 1997b) contains major sections on organizational change, public policy, and culture. As Raphael (1996) noted, much quality-oflife work has been generally positivist in nature, focusing on relatively detached data-collection procedures; however, a number of recent examples in developmental disabilities suggest a movement toward naturalistic approaches, including personal narratives (e.g., Groulx, Dor« e, & Dor« e, 2000; Halle, 2000; Ward, 2000). Recent research tends to be value-based, often explicitly addressing such topics as ÒhealthpromotionÓ(Brown, Renwick, & Nagler, 1996), Òfacilitating relationshipsÓ (Snell & Vogtle, 1997), or ÒsocialintegrationÓ(Anderson, Lakin, Hill, & Chen, 1992); and researchers clearly intend that their work have implications for social policy (Goode, 1997; Turnbull & Brunk, 1997). There are important examples of interactive or participatory research (Edgerton & Gaston, 1991) and research with signiÞcant activist agendas (e.g., Antaki & Rapley, 1996). In short, research on measurement of quality of life in developmental disabilities is rich, diverse, and multifaceted, and we would do well, as Raphael (1996) suggested, to examine it carefully within the framework he proposed. F.

Measurement Outcomes: Typical Findings

The evolution of progressive service ideologies over the past quarter-century or more began with the aim of improving the life conditions of people with developmental disabilities (Menolascino, 1977), and Edgerton (1996) seems to have been right in asserting that most individuals with mental retardation, when given opportunity to live in the community, have managed with reasonable success. But it is also true that people continue to live and work in a variety of settings, that those people are possessed of differing personal and intellectual characteristics, and that the aims of community integration and personal satisfaction are not always achieved. Some individuals living in the community are lonely and Òlive on the fringes of societyÓ(Donegan & Potts, 1988, p. 21) and many people continue to reside in congregate, segregated facilities (Anderson, Prouty, & Lakin, 1999). It is natural for individuals, their advocates, and researchers to raise questions about quality of life in these various circumstances. 1. PEOPLE WITH DISABILITIES Measured quality of life has been shown to correlate with a wide range of personal characteristics, life conditions, and perceptions and attitudes of signiÞcant

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others (Schalock, 1994), though not with age (in the range of 15Ð55years) or sex (Schalock & Keith, 1993), for people with developmental disabilities. Analysis of data from nearly 800 individuals (Keith, Schalock, & Hoffman, 1986) indicated an inverse relationship between quality-of-life scores and individual need levels (the greater oneÕs level of need, the lower the measured quality of life). In a separate sample of 312 people, IQ was signiÞcantly correlated with quality-oflife scores (Schalock & Keith, 1993), although the effect in this study was more pronounced for an Empowerment/Independence scale than for other quality-of-life scales (Satisfaction, Competence, and Social Belonging). However, in groups of 455 (Keith, Schalock, & Hoffman, 1986) and 552 (Schalock, Keith, & Hoffman, 1990) individuals, quality-of-life differences were found among those served in different residential and employment models, even within need-level groups; the general pattern indicated higher quality-of-life scores as the service models more nearly approximated ÒnormalÓliving and working environments. Similar trends were found by Heal and Chadsey-Rusch (1985) for measures of life satisfaction of apartment dwellers and residents of a 58-person intermediate care facility; by Harner and Heal (1993) in a study of 149 people with mental (2000) for retardation living in six different types of residence; and by Otrebski ֒ 57 Polish people living in community and institutional settings. Generally similar quality-of-life patterns are found for people with mental illness, where symptom severity and program restrictiveness have been shown to be related to quality of life (Greenley, Greenberg, & Brown, 1997). 3. COMPARISONS WITH PEOPLE WITHOUT DISABILITIES The importance of connecting quality of life of people with developmental disabilities to that of other citizens has been noted by numerous writers (e.g., Cummins, McCabe, Romeo, Reid, & Waters, 1997; Keith, 1990; Kozleski & Sands, 1992; Williams & Schoultz, 1982). However, most of the data collected to date suggest that many people with disabilities do not enjoy the same quality of life as others living in the same communities. Kixmiller, Keith, and Schalock (1991) analyzed responses of 44 people with mental retardation and 57 of their neighbors, living in community settings in two towns, to three questions: How do you like this town? How do your neighbors treat you? and How often do you talk to your neighbors? Although there was no signiÞcant difference in the responses to the question asking how they liked their towns, the individuals with disabilities reported signiÞcantly less interaction with neighbors and less favorable treatment by their neighbors. In a community study of 86 people with disabilities and 131 without disabilities, Sands and Kozleski (1994) found that those with disabilities reported generally good life satisfaction, but were less likely to enjoy a number of other key quality of life indicators (e.g., independence; community, recreation, and leisure activity; and self-determination). The latter Þndings are consistent with earlier work by Kishi, Teelucksingh, Zollers, Park-Lee, and Meyer (1988), who

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found that adults with mental retardation receiving community-based services had signiÞcantly fewer opportunities to make a variety of important personal decisions, and by Wehmeyer and Schwartz (1998), who reported a signiÞcant relationship between measures of self-determination and quality of life. Recently, in a large statewide study, Keith and Ferdinand (2000) compared quality-of-life data collected from 2699 people with mental retardation residing in 37 Nebraska communities and 442 without mental retardation in the same towns. Data were collected on nine quality-of-life dimensions (satisfaction, productivity/competence, empowerment/independence, social belonging, rights, relationships, economic security, growth/development, and overall perception of well-being), and for all dimensions the statewide averages for citizens with developmental disabilities were signiÞcantly lower than those of people without disabilities. Exceptions to this pattern were most likely to occur in the productivity/competence and growth/development dimensions, for which 11 of the communities showed nonsigniÞcant differences between the groups with and without disabilities. The largest discrepancies were found on the dimensions of rights and empowerment/independence, and the differences on these dimensions were statistically signiÞcant for all of the cities and towns studied. The scores for overall perception of well-being were signiÞcantly higher for citizens without disabilities in all the towns but 1. The Þndings of these studies suggest, on the one hand, that some gains have been made: The quality of life gap has narrowed for some dimensions, and in the occasional community overall perceptions of well-being are similar for individuals with and without disabilities. However, most reported measures continue to show signiÞcant differences between these groups, especially in two areasÑrights and empowermentÑthat are of particular concern to people with disabilities and their advocates (Bach & Rioux, 1996; Ward & Keith, 1996).

IV.

APPLYING THE QUALITY OF LIFE CONCEPT

Landesman (1986), in her landmark editorial, set the stage for application of the quality of life concept in services for individuals with developmental disabilities. Once quality of life was deÞned, she argued, Òserviceproviders and families will be better able to pursue innovative programs to achieve these outcomes; social scientists can focus on developing strategies to measure speciÞc, sensitive outcomes; and administrators and policymakers can adopt more reasonable and effective means for monitoring their programs on a regular basisÓ(p. 142). Thus, the potential utility of quality-of-life measures for program evaluation was recognized, and in the same year Keith, Schalock, and Hoffman (1986) reported quality-of-life data for individuals receiving services in a number of different service delivery models. Soon thereafter, Schalock (1990b) articulated a set of value-based service delivery

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principles that might be implied by the quality-of-life agenda. These principles were as follows: 1. Quality of life is enhanced by satisfying basic needs and fulÞlling responsibilities in regular life settings. 2. Quality of life is enhanced by empowering persons with disabilities and their families to participate in decisions that affect their lives. 3. Quality of life for any given individual is intrinsically related to the quality of life of persons in his or her environment. 4. Quality of life is enhanced by the acceptance and full integration of persons with disabilities and their families into their local communities. 5. Quality of life has both objective and subjective components, but it is primarily the subjective view of the individual that determines the quality of life he or she experiences. 6. Quality of life variables should occupy a prominent role in overall program evaluation (p. 239). It may be seen that program evaluation was envisioned early on as an important application for quality-of-life research in developmental disabilities and that the guiding principles in the Þeld, perhaps unlike those in some other qualityof-life research arenas (cf. Raphael, 1996), were value-driven from the beginning. The possibilities for program evaluation were noted in work on community integration (Keith, 1990), rehabilitation (Fabian, 1991; Roessler, 1990), work life (Parent, 1992), residential services (Bellamy, Newton, LeBaron, & Horner, 1990), aging (Brown, 1989), and transition from secondary education to adult life (Halpern, 1993). At least two American states, Maryland (Bonham et al., 1998) and Nebraska (The ARC of Nebraska, 1998), have used quality-of-life measures in efforts to judge effectiveness of statewide community service systemsÑe xamples of applications that Schalock (1994) has called impact studies (evaluation of the impact of services on quality of life). Beyond speciÞc applications in program evaluation, a number of writers have set forth agendas for use of the quality-of-life concept in determination of public policy. Turnbull and Brunk (1997) presented a view that advocates public policies consistent with, and dedicated to enhancement of, quality of life. Turnbull and Brunk described the relationship between quality of life of citizens with disabilities and those without and concluded by arguing that the means to develop and enhance that relationship Ò. . .is both a public policy issue and the central issue in the lives of those affected by disabilityÓ(p. 208). Goode (1997) expanded the discussion of public policy into the international arena, illustrating the relationship of quality-of-life issues to policies in Europe and within the United Nations. In 1993, the United Nations General Assembly adopted the Standard Rules on the Equalization of Opportunities for Disabled Persons, seeking to provide guidelines

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for governmental efforts to further opportunities for equal participation of persons with disabilities in all aspects of society. These 22 Rules represent potentially practical tools to improve quality of life and well-being of individuals with disabilities in such areas as education, employment, medical care, economics, religion, and policy making. More recently, the World Health Organization (1997) has supported development of efforts to assess quality of life internationally. The policy implications of cautions issued by such writers as Edgerton (1990), Taylor (1984), and Hatton (1998)Ñthat measurement may trivialize quality of life, that the importance of individual subjective experience must be recognized, and that imposition of a quality of life model might unduly control peopleÕs livesÑ must be taken seriously. If, however, policy formulations are based on principles deriving from equity, home, community, and personal empowerment, quality of life is likely to continue to be a signiÞcant factor in evolution of social policy. It seems important, for example, for decision makers to be aware that, across several cultures, measured quality of life has been shown to increase as individuals live and work in more culturally typical environments (Keith, Schalock, & Hoffman, 1986; Otrebski, 2000; Schalock, Bartnik, Wu, Konig, Lee, & Reiter, 1990; Verdugo, ֒ Canal, & Bermejo, 1997); that in poor countries expensive programs may not be necessary if low-cost approaches to social inclusion can improve quality of life by taking sensible advantage of the resources of family, friends, and neighborhood (McConkey & OÕToole, 2000); and that efforts have been made to connect quality of life of people with disabilities to that of other citizens (Kozleski & Sands, 1992; Sands & Kozleski, 1994).

V.

CONCLUSION

Research on quality of life of people with developmental disabilities has proliferated, perhaps more than anyone would have imagined, during the past decade. It was indeed, as several observers predicted at the beginning of the decade, a central issue for the 1990s. It was an issue at once full of promise and fraught with fear. Its potential for misuse in a variety of situations, some of them life-or-death circumstances, made some observers skeptical: Quality of life, after all, has been used at times to justify denial of access to important services, including medical care. To date, researchers studying quality of life of people with disabilities seem to have avoided the worst of these pitfalls and in fact have explicitly embedded their work in a backdrop of values and concern for personal aspirations of individuals. There remain, however, other legitimate concerns about the direction of work in this area. Just as previous concepts (e.g., normalization), in the hands of enthusiastic proponents, ran the risk of becoming templates or programmatic prescriptions at the expense of individual freedom or aspirations, so too could the construct of

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quality of life. This concern is of particular importance in the context of continued controversy over the measurement of quality of life. Reasonable consensus seems to have been achieved on the general dimensions of quality of life, but its multifaceted nature has made agreement on measurement difÞcult to attain. Some of this disagreement has stemmed from technical measurement problems (interview techniques, concerns about acquiescence, validity of various scales versus observation, etc.), and some has arisen from more fundamental questions about the nature of quality of life (as a product of environment or of personal temperament) and whether it can or should be measured at all. I take these differences and concerns to be a good sign. They are likely to produce enough variety of investigation and practice to prompt evolution of new and improved perspectives, and they arise from programs of research that are likely to produce sufÞcient data to allow for a self-corrective function as the work continues. Quality of life research is here to stay, at least for the foreseeable future, and it may prove especially crucial in developing countries and in those in political crisis, where quality of life of individuals with disabilities will be inexorably linked to broader quality of life issues. It is likely also to be tied increasingly to the selfadvocacy/empowerment movement and to a widening concern for mainstream cultural quality of life. These issues present sufÞcient challenges to take the qualityof-life research agenda well into the new millennium. ACKNOWLEDGMENTS I am grateful to Robert A. Cummins, Laraine M. Glidden, and Rebecca Renwick for their helpful comments on an earlier version of this chapter; and to Robert L. Schalock for 30 years of collaboration, collegial support, and friendship, without which my own work on quality of life would not have been possible.

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Bach, M., & Rioux, M. H. (1996). Social well-being: A framework for quality of life research. In R. Renwick, I. Brown, & M. Nagler (Eds.), Quality of life in health promotion and rehabilitation: Conceptual approaches, issues, and applications (pp. 63Ð74).Thousand Oaks, CA: Sage. Bellamy, G. T., Newton, J. S., LeBaron, N. M., & Horner, R. H. (1990). Quality of life and lifestyle outcomes: A challenge for residential programs. In R. L. Schalock (Ed.), Quality of life: Perspectives and issues (pp. 127Ð137).Washington, DC: American Association on Mental Retardation. Blumer, H., (1969). Symbolic interactionism: Perspective and method. Englewood Cliffs, NJ: PrenticeHall. Bonham, G. S., Pisa, L. M., Marchand, C. B., Harris, C., White, D., & Schalock, R. L. (1998). Ask Me! The quality of life of Marylanders with developmental disabilities receiving DDA funded supports. Annapolis, MD: The ARC of Maryland. Borthwick-Duffy, S. A. (1990). Quality of life of persons with severe or profound mental retardation. In R. L. Schalock (Ed.), Quality of life: Perspectives and issues (pp. 177Ð189).Washington, DC: American Association on Mental Retardation. Brislin, R. (1993). Understanding cultureÕs inßuence on behavior. Fort Worth, TX: Harcourt Brace Jovanovich. Brown, I., Renwick, R., & Nagler, M. (1996). The centrality of quality of life in health promotion and rehabilitation. In R. Renwick, I. Brown, & M. Nagler (Eds.), Quality of life in health promotion and rehabilitation: Conceptual approaches, issues, and applications (pp. 3Ð13).Thousand Oaks, CA: Sage. Brown, R. I. (1989). Aging, disability and quality of life: A challenge for society. Canadian Psychology, 30, 551Ð559. Brown, R. I. (2000). Quality of life: Challenges and confrontation. In K. D. Keith & R. L. Schalock (Eds.), Cross-cultural perspectives on quality of life (pp. 347Ð362).Washington, DC: American Association on Mental Retardation. Brown, R. I., Bayer, M., & McFarlane, C. (1989). Rehabilitation programmes: Performance and quality of life of adults with developmental handicaps. Toronto: Lugus Productions. Brown, R. I., Brown, P. M., & Bayer, M. B. (1994). A quality of life model: New challenges arising from a six year study. In D. Goode (Ed.), Quality of life for persons with disabilities: International perspectives and issues. Cambridge, MA: Brookline. Campbell, A., Converse, P., & Rodgers, W. L. (1976). The quality of American life: Peceptions, evaluations, and satisfactions. New York: Russel Sage Foundation. Campo, S. F., Sharpton, W. R., Thompson, B., & Sexton, D. (1996). Measurement characteristics of the Quality of Life Index when used with adults with severe/profound disabilities. American Journal on Mental Retardation, 100, 546Ð550. Carbonell, E. (Ed.). (1999). El constructe de qualitat de vida. [The quality of life construct]. Barcelona, Spain: Coordinara de Tallers per a Minusv`alids Ps«õquicsde Catalunya. Cheng, S. (1988). Subjective quality of life in the planning and evaluation of programs. Evaluation and Program Planning, 11, 123Ð134. Cummins, R. A. (1991). The Comprehensive Quality of Life ScaleÑIntellectual Disability: An instrument under development. Australia and New Zealand Journal of Developmental Disabilities, 17, 259Ð264. Cummins, R. A. (1992). Comprehensive Quality of Life ScaleÑIntellectual Disability (3rd ed.). Melbourne, Australia: Deakin Univ. Press. Cummins, R. A. (1993). Comprehensive Quality of Life ScaleÑIntellectual Disability (4th ed.). Melbourne, Australia: Deakin Univ. Press. Cummins, R. A. (1995). Assessing quality of life. In R. I. Brown (Ed.), Quality of life for handicapped people (pp. 102Ð120).London: Chapman & Hall. Cummins, R. A. (1997). Comprehensive Quality of Life ScaleÑIntellectual Disability (5th ed.). Melbourne, Australia: Deakin Univ. Press.

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Cummins, R. A. (1999, May). A new model of quality of life. Paper presented at the annual convention of the American Association on Mental Retardation. New Orleans, LA. Cummins, R. A., McCabe, M. P., Romeo, Y., Reid, Shelley, & Waters, L. (1997). An initial evaluation of the Comprehensive Quality of Life Scale-Intellectual Disability. International Journal of Disability, Development and Education, 44, 7Ð19. Dennis, R. E., Williams, W., Giangreco, M. F., & Cloninger, C. J. (1993). Quality of life as context for planning and evaluation of services for people with disabilities. Exceptional Children, 59, 499Ð512. Diener, E., & Suh, E. M. (1999). National differences in subjective well-being. In D. Kahneman, E. Diener, & N. Schwarz (Eds.), Well-being: The foundations of hedonic psychology (pp. 434Ð 450). New York: Russell Sage Foundation. Diener, E., Suh, E. M., Lucas, R. E., & Smith, H. L. (1999). Subjective well-being: Three decades of progress. Psychological Bulletin, 125, 276Ð302. Donegan, C., & Potts, M. (1988). People with mental handicap living alone in the community. The British Journal of Mental Subnormality, 35, 10Ð21. Edgerton, R. B. (1990). Quality of life from a longitudinal research perspective. In R. L. Schalock (Ed.), Quality of life: Perspectives and issues (pp. 149Ð160).Washington, DC: American Association on Mental Retardation. Edgerton, R. B. (1991a). Conclusion. In R. B. Edgerton & M. A. Gaston (Eds.), ÒIÕ ve seen it all!Ó(pp. 268Ð273).Baltimore, MD: Paul H. Brookes. Edgerton, R. B. (1991b). Preface. In R. B. Edgerton & M. A. Gaston (Eds.), ÒIÕ ve seen it all!Ó (pp. viiÐx).Baltimore, MD: Paul H. Brookes. Edgerton, R. B. (1996). A longitudinal-ethnographic research perspective on quality of life. In R. L. Schalock (Ed.), Quality of life: Volume I. Conceptualization and measurement (pp. 83Ð 90). Washington, DC: American Association on Mental Retardation. Edgerton, R. B., & Gaston, M. A. (Eds.). (1991). ÒIÕ ve seen it allÓBaltimore, MD: Paul H. Brookes. Evans, D. R., Burns, J. E., Robinson, W. E., & Garrett, O. J. (1985). The Quality of Life Questionnaire: A multi-dimensional measure. American Journal of Community Psychology, 13, 305Ð322. Fabian, E. S. (1991). Using quality-of-life indicators in rehabilitation program evaluation. Rehabilitation Counseling Bulletin, 34, 344Ð356. Feather, N. T. (1994). Values and culture. In W. J. Lonner & R. Malpass (Eds.), Psychology and culture (pp. 183Ð189).Boston: Allyn & Bacon. Felce, D. (1996, July). DeÞning and applying the concept of quality of life. Paper presented at the World Congress of the International Association for ScientiÞc Study of Intellectual Disabilities, Helsinki, Finland. Felce, D. (2000). Engagement in activity as an indicator of quality of life in British research. In K. D. Keith & R. L. Schalock (Eds.), Cross-cultural perspectives on quality of life (pp. 173Ð190). Washington, DC: American Association on Mental Retardation. Felce, D., Lowe, K., & de Paiva, S. (1994). Ordinary housing for people with severe learning disabilities and challenging behaviours. In E. Emerson, P. McGill, & J. Mansell (Eds.), Severe learning disabilities and challenging behaviours (pp. 97Ð118).London: Chapman & Hall. Felce, D., & Perry, J. (1995). Quality of life: its deÞnition and measurement. Research in Developmental Disabilities, 16, 51Ð74. Felce, D., & Perry, J. (1996). Exploring current conceptions of quality of life. In R. Renwick, I. Brown, & M. Nagler (Eds.), Quality of life in health promotion and rehabilitation: Conceptual approaches, issues, and applications (pp. 51Ð62).Thousand Oaks, CA: Sage. Flanagan, J. C. (1978). A research approach to improving our quality of life. American Psychologist, 33, 138Ð147. Flanagan, J. C. (1982). Measurement of quality of life: Current state of the art. Archives of Physical Medicine and Rehabilitation, 63, 56Ð59.

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Goode, D. (1997). Quality of life as international disability policy: Implications for international research. In R. L. Schalock (Ed.), Quality of life. Volume II. Application to persons with disabilities (pp. 211Ð221).Washington, DC: American Association on Mental Retardation. Goode, D. (Ed.). (1994). Quality of life for persons with disabilities: International perspectives and issues. Cambridge, MA: Brookline. Goode, D., & Hogg, J. (1994a). Towards an understanding of holistic quality of life in people with profound intellectual and multiple disabilities. In D. Goode (Ed.), Quality of life for persons with disabilities: International perspectives and issues (pp. 197Ð207).Cambridge, MA: Brookline. Greenley, J. R., Greenberg, J. S., & Brown, R. (1997). Measuring quality of life: A new and practical survey instrument. Social Work, 42, 244Ð254. Gross, R. H., Cox, A., Tatyrek, R., Pollay, M., & Barnes, W. A. (1983). Early management and decision-making for the treatment of myelomeningocele. Pediatrics, 72, 450Ð458. Groulx, R., Dor« e, R., & Dor« e, L. (2000). My quality of life as I see it. In K. D. Keith & R. L. Schalock (Eds.), Cross-cultural perspectives on quality of life (pp. 23Ð28). Washington, DC: American Association on Mental Retardation. Halle, S. (2000). Quality of life: A personal perspective from Finland. In K. D. Keith & R. L. Schalock (Eds.), Cross-cultural perspectives on quality of life (pp. 29Ð32). Washington, DC: American Association on Mental Retardation. Halpern, A. S. (1993). Quality of life as a conceptual framework for evaluating transition outcomes. Exceptional Children, 59, 486Ð498. Halpern, A. S., Nave, G., Close, D. W., & Nelson, D. J. (1986). An empirical analysis of the dimensions of community adjustment for adults with mental retardation. Australia and New Zealand Journal of Developmental Disabilities, 12, 147Ð157. Harner, C. J., & Heal, L. W. (1993). The Multifaceted Lifestyle Satisfaction Scale (MLSS): Psychometric properties of an interview schedule for assessing personal satisfaction of adults with limited intelligence. Research in Developmental Disabilities, 14, 221Ð236. Hatton, C. (1998). Whose quality of life is it anyway? Some problems with the emerging quality of life consensus. Mental Retardation, 36, 104Ð115. Hawkins, B. A., Kim, K., & Eklund, S. J. (1995). Validity and reliability of a Þve dimensional life satisfaction index. Mental Retardation, 33, 295Ð303. Heal, L. W. (1996). [Review of the book Quality of life for persons with disabilities: International perspectives and issues]. American Journal on Mental Retardation, 100, 557Ð560. Heal, L. W., Borthwick-Duffy, S. A., & Saunders, R. R. (1996). Assessment of quality of life. In J. W. Jacobson & J. A. Mulick (Eds.), Manual of diagnosis and professional practices in mental retardation (pp. 199Ð209).Washington, DC: American Psychological Association. Heal, L. W., & Chadsey-Rusch, J. (1985). The Lifestyle Satisfaction Scale (LSS): Assessing individualsÕ satisfaction with residence, community setting, and associated services. Applied Research in Mental Retardation, 6, 475Ð490. Heal, L. W., Rubin, S. S., & Park, W. (1995). Lifestyle Satisfaction Scale. Champaign-Urbana, IL: Transition Research Institute, Univ. of Illinois. Heal, L. W., Schalock, R. L., & Keith, K. D. (1992, July). Cross-cultural attributions of meaning to quality of life concepts made by mental retardation professionals. Paper presented at the World Congress of the Internatonal Association for the ScientiÞc Study of Mental DeÞciency. Brisbane, Australia. Heal, L. W., & Sigelman, C. K. (1990). Methodological issues in measuring the quality of life of individuals with mental retardation. In R. L. Schalock (Ed.), Quality of life: Perspectives and issues (pp. 161Ð176).Washington, DC: American Association on Mental Retardation. Hughes, C., Hwang, B., Kim, J., Eisenman, L. T., & Killian, D. J. (1995). Quality of life in applied research: A review and analysis of empirical measures. American Journal on Mental Retardation, 99, 623Ð641.

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Jones, E., Perry, J., Lowe, K., Felce, D., Toogood, S., Dunstan, F., Allen, D., & Pagler, J. (1997). Opportunity and the promotion of activity among adults with severe learning disabilities living in community housing: The impact of training staff in active support. Cardiff: Univ. of Wales College of Medicine. Keith, K. D. (1990). Quality of life: Issues in community integration. In R. L. Schalock (Ed.), Quality of life: Perspectives and issues (pp. 93Ð100).Washington, DC: American Association on Mental Retardation. Keith, K. D. (1996). Measuring quality of life across cultures: Issues and challenges. In R. L. Schalock (Ed.), Quality of life: Volume I. Conceptualization and measurement (pp. 73Ð82).Washington, DC: American Association on Mental Retardation. Keith, K. D., & Ferdinand, L. R. (2000). Project to compare quality of life of Nebraskans with developmental disabilities and citizens without disabilities. Lincoln: GovernorÕs Planning Council on Developmental Disabilities. Keith, K. D., Heal, L. W., & Schalock, R. L. (1996). Cross-cultural measurement of critical quality of life concepts. Journal of Intellectual and Developmental Disability, 21, 273Ð293. Keith, K. D., & Schalock, R. L. (1995). Quality of Student Life Questionnaire. Worthington, OH: IDS. Keith, K. D., & Schalock, R. L. (2000). Cross-cultural perspectives on quality of life: Trends and themes. In K. D. Keith & R. L. Schalock (Eds.), Cross-cultural perspectives on quality of life (pp. 363Ð380).Washington, DC: American Association on Mental Retardation. Keith, K. D., Schalock, R. L., & Hoffman, K. (1986). Quality of life: Measurement and programmatic implications. Lincoln, NE: Region V Mental Retardation Services. Keith, K. D., Yamamoto, M., Okita, N., & Schalock, R. L. (1995). Cross-cultural quality of life: Japanese and American college students. Social Behavior and Personality, 23, 163Ð170. Kishi, G., Teelucksingh, B., Zollers, N., Park-Lee, S., & Meyer, L. (1988). Daily decision-making in community residences: A social comparison of adults with and without mental retardation. American Journal on Mental Retardation, 92, 430Ð435. Kixmiller, J. S., Keith, K. D., & Schalock, R. L. (1991). Views on town and neighborhood: Adults with mental retardation and their neighbors. Nebraska Journal of Psychology, 1, 18Ð22. Koide, S., Ozaki, Y., Katsura, K., Saito, K., Suzuki, T., Tachi, A., Nakatsubo, K., Nagoya, T., Honma, H., & Miyatake, H. (1996). Report on employment and life of the mentally retarded. Tokyo: The NHK Health, Welfare, and Cultural Foundation. Kozleski, E. B., & Sands, D. J. (1992). The yardstick of social validity: Evaluating quality of life as perceived by adults without disabilities. Education and Training in Mental Retardation, 27(2), 119Ð131. Land, K., & Spilerman, S. (Eds.). (1975). Social indicator models. New York: Russell Sage Foundation. Landesman, S. (1986). Quality of life and personal life satisfaction: DeÞnition and measurement issues. Mental Retardation, 24, 141Ð143. Liu, B. C. (1976). Quality of life indicators in U.S. metropolitan areas: A statistical analysis. New York: Praeger. Luckasson, R. (1990). A lawyerÕs perspective on quality of life: In R. L. Schalock (Ed.), Quality of life: Perspectives and issues (pp. 211Ð214).Washington, DC: American Association on Mental Retardation. Luckasson, R. (1997). Foreward. In R. L. Schalock (Ed.), Quality of life: Volume II. Application to persons with disabilities (pp. viiÐx).Washington, DC: American Association on Mental Retardation. Markus, H., & Kitayama, S. (1991). Culture and the self: Implications for cognition, emotion, and motivation. Psychological Review, 98, 224Ð253. McConkey, R., & OÕToole, B. (2000). Improving the quality of life of people with disabilities in

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least afßuent countries: Insights from Guyana, South America. In K. D. Keith & R. L. Schalock (Eds.), Cross-cultural perspectives on quality of life (pp. 281Ð290).Washington, DC: American Association on Mental Retardation. McGill, P., Emerson, E., & Mansell, J. (1994). Individually designed residential provision for people with seriously challenging behaviours. In E. Emerson, P. McGill, & J. Mansell (Eds.), Severe learning disabilities and challenging behaviours (pp. 119Ð156).London: Chapman & Hall. Menolascino, F. J. (1977). Challenges in mental retardation: Progressive ideology and services. New York: Human Sciences Press. Milbrath, L. W. (1979). Policy relevant quality of life research. Annals of the American Academy of Political and Social Science, 444, 33Ð45. Myers, D. G. (1992). The pursuit of happiness: Who is happy and why. New York: William Morrow. Myers, D. G. (2000). The funds, friends, and faith of happy people. American Psychologist, 55, 56Ð67. Osgood, C. E., May, W. H., & Miron, M. S. (1975). Cross cultural universals of affective meaning. Urbana: Univ. of Illinois Press. Otrebski, W. (2000). Quality of life of people with mental retardation living in two different environ֒ ments in Poland. In K. D. Keith & R. L. Schalock (Eds.), Cross-cultural perspectives on quality of life (pp. 83Ð92).Washington, DC: American Association on Mental Retardation. Ouellette-Kuntz, H. (1990). A pilot study in the use of the Quality of Life Interview Schedule. Social Indicators Research, 23, 283Ð298. Ouellette-Kuntz, H., & McCreary, B. (1996). Quality of life assessment for persons with severe developmental disabilities. In R. Renwick, I. Brown, & M. Nagler (Eds.), Quality of life in health promotion and rehabilitation (pp. 268Ð278).Thousand Oaks, CA: Sage. Parent, W. (1992). Quality of life and consumer choice. In P. Wehman (Ed.), ADA mandate for social change (pp. 19Ð41).New York: Academic Press. Parmenter, T. R. (1992). Quality of life of people with developmental disabilities. International Review of Research in Mental Retardation, 18, 247Ð287. Parmenter, T. R. (1996). The use of quality of life as a construct for social and health policy development. In R. Renwick, I. Brown, & M. Nagler (Eds.), Quality of life in health promotion and rehabilitation: Conceptual approaches, issues, and applications (pp. 89Ð103).Thousand Oaks, CA: Sage. Patrick, D. L., & Erickson, P. (1993). Assessing health-related quality of life for clinical decisionmaking. In S. R. Walker & R. M. Rosser (Eds.), Quality of life assessment: Key issues in the 1990Õs (pp. 11Ð63).London: Kluwer. Perry, J., & Felce, D. (1995). Objective assessments of quality of life: How much do they agree with each other? Journal of Community & Applied Social Psychology, 5, 1Ð19. Raphael, D. (1996). DeÞning quality of life: Eleven debates concerning its measurement. In R. Renwick, I. Brown, & M. Nagler (Eds.), Quality of life in health promotion and rehabilitation: Conceptual approaches, issues, and applications (pp. 146Ð165).Thousand Oaks, CA: Sage. Rapley, M. (2000). The social construction of Òqualityof lifeÓ:The interpersonal production of wellbeing revisited. In K. D. Keith & R. L. Schalock (Eds.), Cross-cultural perspectives on quality of life (pp. 155Ð172).Washington, DC: American Association on Mental Retardation. Rapley, M., & Hopgood, L. (1997). Quality of life in a community-based service in rural Australia. Journal of Intellectual & Developmental Disability, 22, 125Ð141. Rapley, M., & Lobley, J. (1995). Factor analysis of the Schalock & Keith (1993) Quality of Life Questionnaire: A replication. Mental Handicap Research, 8, 194Ð202. Rawlings, S. (1985). Behaviour and skills of severely retarded adults in hospitals and small residential homes. British Journal of Psychiatry, 146, 358Ð366. Raynes, N. V., Sumpton, R. C., & Pettipher, C. (1989). The index of community involvement. Manchester, UK: The University Department of Social Policy and Social Work. Renwick, R., & Brown, I. (1996). The Centre for Health PromotionÕs conceptual approach to quality

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of life: Being, belonging, and becoming. In R. Renwick, I. Brown, & M. Nagler (Eds.), Quality of life in health promotion and rehabilitation: Conceptual approaches, issues, and applications (pp. 75Ð86).Thousand Oaks, CA: Sage. Renwick, R., Brown, I., & Raphael, D. (2000). Person-centered quality of life: Contributions from Canada to an international understanding. In K. D. Keith & R. L. Schalock (Eds.), Cross-cultural perspectives on quality of life. Washington, DC: American Association on Mental Retardation. Roessler, R. T. (1990). A quality of life perspective on rehabilitation counseling. Rehabilitation Counseling Bulletin, 34, 82Ð90. Ryan, R. M., & Deci, E. L. (2000). Self-determination theory and the facilitation of intrinsic motivation, social development, and well-being. American Psychologist, 55, 68Ð78. Sands, D. J., & Kozleski, E. B. (1994). Quality of life differences between adults with and without disabilities. Education and Training in Mental Retardation and Developmental Disabilities, 29, 90Ð101. Schalock, R. L. (1990a). Preface. In R. L. Schalock (Ed.), Quality of life: Perspectives and issues (pp. ixÐxii).Washington, DC: American Association on Mental Retardation. Schalock, R. L. (1990b). Where do we go from here? In R. L. Schalock (Ed.), Quality of life: Perspectives and issues (pp. 235Ð240).Washington, DC: American Association on Mental Retardation. Schalock, R. L. (1994). The concept of quality of life and its current applications in the Þeld of mental retardation/developmental disabilities. In D. Goode (Ed.), Quality of life for persons with disabilities: International perspectives and issues (pp. 266Ð284). Cambridge, MA: Brookline. Schalock, R. L. (1996). Reconsidering the conceptualization and measurement of quality of life. In R. L. Schalock (Ed.), Quality of life: Volume I. Conceptualization and measurement (pp. 123Ð 139). Washington, DC: American Association on Mental Retardation. Schalock, R. L. (1997a). Can the concept of quality of life make a difference? In R. L. Schalock (Ed.), Quality of life: Volume II. Application to persons with disabilities (pp. 245Ð267).Washington, DC: American Association on Mental Retardation. Schalock, R. L. (Ed.). (1997b). Quality of life: Volume II. Application to persons with disabilities. Washington, DC: American Association on Mental Retardation. Schalock, R. L., Bartnik, E., Wu, F., Konig, A., Lee, C. S., & Reiter, S. (1990, May). An international perspective in quality of life: Measurement and use. Presented at the annual meeting of the American Association on Mental Retardation, Atlanta, GA. Schalock, R. L., & Jensen, C. M. (1986). Assessing the goodness-of-Þt between persons and their environments. Journal of the Association for the Severely Handicapped, 11, 103Ð109. Schalock, R. L., & Keith, K. D. (1993). Quality of life questionnaire. Worthington, OH: IDS. Schalock, R. L., Keith, K. D., & Hoffman, K. (1990). 1990 Quality of Life Questionnaire standardization manual. Hastings, NE: Mid-Nebraska Mental Retardation Services, Inc. Schalock, R. L., Keith, K. D., Hoffman, K., & Karan, O. C. (1989). Quality of life: Its measurement and use. Mental Retardation, 27, 25Ð31. Snell, M. E., & Vogtle, L. K. (1997). Facilitating relationships of children with mental retardation in schools. In R. L. Schalock (Ed.), Quality of life: Volume II. Application to persons with disabilities (pp. 43Ð61).Washington, DC: American Association on Mental Retardation. Stancliffe, R. J. (1995). Assessing opportunities for choice-making: A comparison of self- and staff reports. American Journal on Mental Retardation, 99, 418Ð429. Taylor, S. J. (1994). In support of research on quality of life, but against QOL. In D. Goode (Ed.), Quality of life for persons with disabilities: International perspectives and issues (pp. 260Ð265). Cambridge, MA: Brookline. Taylor, S. J., & Bogdan, R. (1984). Introduction to qualitative research methods (2nd ed.). New York: Wiley. Taylor, S. J., & Bogdan, R. (1996). Quality of life and the individualÕs perspective. In R. L.

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Schalock (Ed.), Quality of life: Volume I. Conceptualization and measurement (pp. 11Ð22). Washington, DC: American Association on Mental Retardation. Thorndike, E. L. (1939). Your city. New York: Harcourt Brace. Turnbull, H. R., III, & Brunk, G. L. (1997). Quality of life and public policy. In R. L. Schalock (Ed.), Quality of life: Volume II. Application to persons with disabilities (pp. 201Ð209).Washington, DC: American Association on Mental Retardation. Verdugo, M. A., Canal, R., & Bermejo, B. G. (1997, May). Enhancing residential services for persons with mental retardation and extensive support needs. Paper presented at the meeting of the American Association on Mental Retardation, New York, NY. Ward, N. (2000). The universal power of speaking for oneself. In K. D. Keith & R. L. Schalock (Eds.), Cross-cultural perspectives on quality of life (pp. 33Ð36).Washington, DC: American Association on Mental Retardation. Ward, N. A., & Keith, K. D. (1996). Self-advocacy: Foundation for quality of life. In R. L. Schalock (Eds.), Quality of life: Volume I. Conceptualization and measurement (pp. 5Ð10).Washington, DC: American Association on Mental Retardation. Wehmeyer, M., & Schwartz, M. (1998). The relationship between self-determination and quality of life for adults with mental retardation. Education and Training in Mental Retardation and Developmental Disabilities, 33, 3Ð12. Williams, P., & Shoultz, B. (1982). We can speak for ourselves: Self-advocacy by mentally handicapped people. London: Souvenir Press. Wolfensberger, W. (1994). LetÕs hang up Òquality of lifeÓ as a hopeless term. In D. Goode (Ed.), Quality of life for persons with disabilities: International perspectives and issues (pp. 285Ð321). Cambridge, MA: Brookline. World Health Organization (1997). Measuring quality of life: The World Health Organization quality of life instruments. Geneva, Switzerland: Author.

Measuring Quality of Life and Quality of Services through Personal Outcome Measures: Implications for Public Policy JAMES GARDNER THE COUNCIL ON QUALITY AND LEADERSHIP TOWSON, MARYLAND

DEBORAH T. CARRAN JOHNS HOPKINS UNIVERSITY BALTIMORE, MARYLAND

SYLVIA NUDLER THE COUNCIL ON QUALITY AND LEADERSHIP TOWSON, MARYLAND

I.

INTRODUCTION AND HISTORY OF THE COUNCIL

The Council on Quality and Leadership in Supports for People with Disabilities (The Council) developed from the efforts of the American Association on Mental DeÞciency (AAMD) in publishing the Standards for State Residential Institutions for the Mentally Retarded in 1964. In 1966, AAMD, the National Association for Retarded Citizens (ARC), the Council for Exceptional Children (CEC), and United Cerebral Palsy Associations, Inc. (UCPA) formed the National Planning Committee on Accreditation of Residential Centers for the Retarded. In 1969, The Joint Commission on Accreditation of Hospitals (JCAH) invited the National Planning Committee to develop an accreditation council within the administrative structure of JCAH.

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As one of the Councils of JCAH during the 1970s, the Accreditation Council for Facilities for the Mentally Retarded (ACFMR) developed accreditation standards and performed accreditation reviews of facilities providing services to people with mental retardation. In 1979, ACFMR reorganized as an independent nonproÞt organization, The Accreditation Council on Services for Mentally Retarded and other Developmentally Disabled Persons (ACMRDD). During the decades of the 1970s and 1980s The Council played a national leadership role in the design and dissemination of accreditation standards. The Council developed its standards by forging a consensus in meetings with professionals, representatives from federal and state governments, service providers, and families of people with disabilities. Organizations became accredited by demonstrating that their practices were not inconsistent with the organizational requirements set forth in the standards. The Council measured quality in services by the extent of compliance with the prescribed organizational process requirements. The Council led the nation in the development of standards in legal rights, behavior intervention, habilitation planning, and interdisciplinary team process. Many of The CouncilÕs standards have been enacted into federal and state legislation including the Health Care Financing Administration (HCFA) regulations and standards for the Intermediate Care Facility/Mentally Retarded (ICF/MR) Program. In the early 1990s, however, The Council on Quality and Leadership in Supports for People with Disabilities (The Council) began to develop an alternative quality performance measurement system. Successive editions of the standards (1984, 1987, 1990) stressed professional deÞnitions of practice rather than the beneÞts or impact of the service on service recipients themselves. In addition, there was no science connecting the prescribed organizational processes with the diverse variables that inßuence quality of life and quality of services for people with disabilities. Many organizations achieved accreditation status by maintaining the proper audit trails, the right documentation, and the designated policies and procedures.

II.

TOWARD A “PERSON-BY-PERSON” APPROACH

In 1991 the Board of Directors of The Council adopted four criteria to guide the design and development of a new set of generic quality measures. The new measures had to be outcome based, concise, applicable to people with different disabilities, and applicable to a wide range of services and supports in different environments. With grant funding from the Illinois Department of Mental Health and Developmental Disabilities and the Illinois Planning Council on Developmental Disabilities, The Council in 1992 conducted individual and focus group interviews with people with a wide range of disabilities to identify the outcomes

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they expected from services and supports. The responses were incorporated in a Preliminary Outcome Based Performance Measures manual (The Accreditation Council, 1992) and pilot tested at four sites in Illinois and Maryland. During 1992 and 1993, The Council continued to reÞne the 30 outcome measures. A Field Edition of the Outcome Based Performance Measures (The Council, 1992) was compiled and used as the Þrst instrument to conduct 10 Þeld tests in the United States and Canada. This resulted in the Þrst edition of the Outcome Based Performance Measures (The Council, 1993). The Council then began to use the Outcome Based Performance Measures as the criteria for measuring quality in conducting international accreditation, service, and education and training conferences. With the support from the HCFA, an initial database was constructed from 447 individuals interviewed during accreditation reviews with the Outcome Based Performance Measures. These interviews were conducted at 54 organizations in 16 states throughout the United States and included individuals with a range of developmental disabilities (The Council, 1995). Based upon the factor analysis (Gardner, Nudler, & Chapman, 1997), the Outcome Based Performance Measures were revised as the Personal Outcome Measures (The Council, 1997) containing 25 outcome items under seven domains. QualiÞcation and methodology for applying the Personal Outcome Measures has been widely discussed (The Council 1993, 1997; Gardner, Nudler, & Chapman, 1997). The major methodological point in the results on this speciÞc instrument development has been that these personal outcomes have no norm. Each person interviewed identiÞes his or her own meaning for each of the 25 outcome items. As such, there are no standardized deÞnitions for any of the 25 outcome items (i.e., choosing work, performing different social roles, or remaining connected to natural support networks). Each individual interviewed describes his or her own deÞnition of the answer to each outcome item. The measurement of the outcomes requires a determination around the dichotomous variable of ÒyesÓor ÒnoÓin answer to the question, ÒIsthe outcome, as deÞned by the individual, present or absent?Ó The key to this body of research has been personal outcomes, as deÞned by each individual with developmental disabilities, rather than a standardized deÞnition of personal outcomes. Personal outcomes become indicators to evaluate quality of life for individuals with disabilities.

III.

A SOCIAL CONTEXT FOR QUALITY AND OUTCOMES

As society has changed across time, so too has the deÞnition of quality. In an examination of the deÞnitions of quality, Reeves and Bednar (1994) concluded that there were Òmultipleand often muddled deÞnitionsÓ(p. 419) of the term. In

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the mass production of factory goods, quality was most frequently deÞned as conformance with speciÞcations. Widgets must all be standardized and uniform, each having been compared against a ÒgoldstandardÓcriterion. In contrast, a service economy deÞnes quality in terms of a customer value paradigm with personal outcome as the indicator (Albrecht, 1992; Peppers & Rogers, 1993; Reeves & Bednar, 1994). In this paradigm, the indicator for customer value is the consumerÕs judgment of the quality (Zeithaml, Parasuraman, & Berry, 1990). This shifting deÞnition of quality also generalizes to services for people with disabilities (Bradley, Ashbaugh, & Blaney, 1994; Gardner, 1999). Human service organizations have reorganized services around individuals rather than have merely assigned people to program slots (Dillon, 1993). Emphasis on individual judgement of design and quality appears in Quality of Life research which includes person-centered planning, self-determination, and personal outcomes (Gardner & Nudler 1999; Goode, 1994; Schalock, 1996; Taylor & Bogdan, 1990;Wehmeyer & Schwartz, 1998). DeÞning quality in personal terms is evident in the numerous person-centered planning models. Person-centered planning is critical for individuals with disabilities if they are to be assimilated into the community (Mount, 1994). Different methods and formats for person-centered planning include (a) Individual Service Design (Yates, 1980); (b) Functional Lifestyle Planning (Green-McGowen, 1985); (c) Personal Futures Planning (Mount and Zwernik, 1988, OÕBrien, 1987); (d) McGill Action Planning Systems (Forrest & Snow, 1987); (e) Essential Lifestyle Planning (Smull & Harrison, 1992); and (f) Personal Outcome Planning (The Council, 1999). The focus on planning the program around the individual has also fostered a shift in the evaluation of the program. The CouncilÕs activities in accreditation of programs for people with developmental disabilities, prior to 1992, centered on record keeping of criterion guidelines for health and safety and written documentation of delivery of services. Changing to the measurement system of Personal Outcome Measures (1997) mandated a change of indicators for evaluation of outcomes. This change parallels the recent trend in the measurement of personal outcomes for individuals with developmental disabilities (McLoughlin, Garner, & Callahan, 1987; Schalock, 1995; Walls & Tseng, 1987). Parmenter (1994), quoting from the work of Flanagan (1978), noted that Òtheeffects on each individualÕs quality of life should be evaluated in terms of his or her personal values and needsÓ(1994, p. 251).

IV.

THE IMPORTANCE OF PERSONAL OUTCOMES

Personal outcomes are important because they provide both a systematic process of planning for people as well as a valid and reliable system for measuring

PERSONAL OUTCOMES

79

quality of life and quality of services. The Personal Outcomes have three signiÞcant applications contributing to person-centered planning: r Learning: Employees use the Personal Outcome Measures to learn about people receiving services and supports. The organizationÕs staff discover the personÕs own meaning for each of the 25 Personal Outcome Measures. r Facilitating: Once the organization has learned a personÕs deÞnition of the outcomes, it may then organize resources and coordinate the services and supports that facilitate these outcomes. Sometimes organizations and teams have to try several different ways to facilitate an outcome. Learning from different approaches often leads to the most practical mixture of supports and services for facilitating an outcome. r Measuring: After the organization aligns services and supports to facilitate personal outcomes, it may then reevaluate to determine if the person has achieved the outcome he or she previously deÞned. The organization then aggregates the individual determinations to form a picture of how well the organization is performing. An evaluation of personal outcomes can serve both formative or summative purposes as well as be used as a self-assessment performed internally or by an independent third-party evaluator. The use of the Personal Outcome Measures for learning, facilitating, or measuring leads organizations into four signiÞcant changes as follows: 1. The organizational focus shifts from compliance to responsiveness; attending to the personal outcomes of people served. 2. The transition from a product to a market focus. This became evident as The Council developed its personal outcome measures in response to the individual and focus group responses of people with disabilities. 3. The measurement of outcomes replaces the measurement of organizational processes. 4. There is a shift from detailed complexity to dynamic connections as organizations begin to understand the connection and relationships among outcomes and how organizational processes facilitate those outcomes. The use of personal outcomes to evaluate programs serving individuals with disabilities presents new opportunities for both individuals with disabilities and their providers. The greatest strides in the application of outcomes measurement have been made in the Þeld of developmental disabilities (Burwell & Jackson, 1999). The growing popularity of person-centered planning and personal outcome evaluation raises central questions about the current design and implementation of community services such as the following:

80

J. Gardner, D. T. Carran, and S. Nudler

r The Þrst question relates to the promotion of personal outcomes at the expense of basic protections. What structure and organizational process requirements are necessary to promote and protect health, safety, and welfare? Do proscriptive requirements for habilitation planning and services promote or inhibit personal outcomes? What regulatory requirements could be eliminated and what organizational process requirements are needed to promote personal outcomes? r A second question addresses the relationship between cost of services and outcomes. Holding other variables equal, do expensive services and supports facilitate a greater number of personal outcomes than less costly services? In terms of Þnancing services, are more restrictive (and more expensive) residential and day settings needed for people with more severe disabilities? r The growing popularity of person-centered planning raises the third question of what variable or set of variables maximize personal outcomes in people with different characteristics. Are there differences in Þnancing and funding of services, size of organizations, type of residential settings, and level of disability that inßuence attainment of personal outcomes? The answers to these questions and an examination of the relationships among variables and personal outcomes can provide valuable information for the design and implementation of future community based services and supports. With the introduction of the Personal Outcome Measures in 1993, The Council recognized the need and obligation to collect data and information on personal outcomes and individual and organizational variables to better address public policy, service design, and Þnancing questions. Individual with disabilities can identify the personal outcomes they expect from services and supports. Individuals with disabilities and their families, as well as taxpayers, are asking for effective and efÞcient services and supports that facilitate outcomes. Public policy makers and service and support providers should be aware of the interplay of organizational and individual variables that promote outcomes.

V. A.

METHOD

Subjects

Subjects for this study were a subsample (n = 1372) from the larger National Outcomes Database (N = 1851). The subsample represented the three largest disability groups surveyed: (a) individuals with Severe and Profound Mental Retardation (MR P/S), (b) individuals with Mild and Moderate Mental Retardation (MR M/M), and (c) individuals with chronic Mental Illness (MI). All disability groups are represented in the database; however, the three disability groups selected

81

PERSONAL OUTCOMES

TABLE I SELECTED DEMOGRAPHIC CHARACTERISTICS FOR SUBJECTS BY DISABILITY GROUPS MR S/P N (%)

MR M/M N (%)

MI N (%)

Total N (%)

Gender Male Female

275 (55.9) 217 (44.1)

384 (55.3) 310 (44.7)

125 (59.0) 87 (41.0)

784 (56.1) 614 (43.9)

Age group 65

1 (0.2) 35 (7.2) 427 (87.7) 24 (4.9)

3 (0.4) 38 (5.5) 609 (88.8) 36 (5.2)

5 (2.4) 7 (3.3) 178 (85.2) 19 (9.1)

9 (0.7) 80 (5.8) 1214 (87.8) 79 (5.7)

Information source Self Staff member Family member Other

61 (12.3) 280 (56.3) 147 (29.6) 9 (1.8)

414 (59.0) 186 (26.5) 89 (12.7) 13 (1.9)

112 (52.1) 83 (38.6) 19 (8.8) 1 (0.5)

587 (41.5) 549 (38.8) 255 (18.0) 23 (1.6)

Variable

comprise 74% of the sample. Table I presents the demographic characteristics for this subsample and Table II presents selected organizational characteristics. B.

Variables

1. DEPENDENT VARIABLES The instrument used for this analysis was the 25-item Personal Outcome Measures (see Gardner, Nudler, & Chapman, 1997 for validity and reliability). This instrument is used during a personal interview format for an individual with disabilities and scored by a trained interviewer. Items are scored in a dichotomous format using standardized administration procedures as ÒYes,Óthe speciÞc outcome is determined to be present for the individual, or ÒNo,Óthe speciÞc outcome is not present. The interview usually takes between 1.5 and 2 hours per individual. The individual may be the source of the information for the interview or staff or family may respond (see Table I). Items are scored individually by the interviewers using pencil-and-paper forms and the data are sent to The CouncilÕs main ofÞce to be entered into a database and checked for accuracy. The 25-item Personal Outcome Measures have been validated using factor analysis and load on seven domains (see Table III). Since there are no norms for this instrument and the population represents varying degrees of disability, a total instrument score may not be as informative as the separate domain scores. For this

82

J. Gardner, D. T. Carran, and S. Nudler TABLE II SELECTED ORGANIZATIONAL CHARACTERISTICS FOR SUBJECTS BY DISABILITY GROUPS MR S/P N (%)

MR M/M N (%)

MI N (%)

Total N (%)

Primary Funding ICF/MR1 HCBW2 State Private

225 (62.3) 115 (28.1) 38 (9.3) 1 (0.2)

117 (23.2) 260 (51.6) 120 (23.8) 7 (1.4)

21 (15.3) 56 (40.9) 55 (40.1) 5 (3.6)

393 (37.4) 431 (41.0) 213 (20.3) 13 (1.2)

Living Arrangement Natural Family Foster Family Supervised Living Supported Living Independent Living

33 (7.5) 9 (2.0) 382 (86.6) 16 (3.6) 1 (0.2)

74 (12.1) 21 (3.4) 321 (52.5) 145 (23.7) 50 (8.2)

18 (9.6) 4 (2.1) 119 (63.3) 30 (16.0) 17 (9.0)

125 (10.1) 34 (2.7) 822 (66.3) 191 (15.4) 68 (5.5)

Size of Organization 500

58 (14.5) 68 (17.0) 102 (25.6) 109 (27.3) 62 (15.5)

114 (21.7) 88 (16.7) 121 (23.0) 152 (28.9) 51 (9.7)

19 (23.5) 13 (16.0) 25 (30.9) 18 (22.2) 6 (7.4)

191 (19.0) 169 (16.8) 248 (24.7) 279 (27.7) 119 (11.8)

Variable

Note. 1ICF/MR: Intermediate Care Facility for Mentally Retarded. 2 HCBW: Home and Community Based Water Program.

reason, the seven domain scores have been used for the dependent variables in this study. 2. INDEPENDENT VARIABLES Variables selected for analysis are organizational characteristics which are (a) individualÕs primary funding source, (b) living arrangement for the individual, and (c) size of the organization serving the individual (see Table II). For analysis of primary funding source the category of private pay was dropped due to the small number of individuals with that primary funding source and similarly the category of independent living for living arrangement was dropped due to the limited number of individuals with severe and profound mental retardation in this cell. C.

Data Analysis

For these data, there is not a single dependent variable or outcome to predict. Instead, there are multiple dependent variables, the seven factor scores. Such data require multivariate analysis used for purposes of supervised investigative

83

PERSONAL OUTCOMES

TABLE III FACTORS AND OUTCOME ITEMS OF THE PERSONAL OUTCOME MEASURES Factors

Outcome

Identity

People choose personal goals. People choose where and with whom to live. People choose where they work. People have intimate relationships. People are satisÞed with services. People are satisÞed with their personal life situations.

Autonomy

People choose their daily routines. People have time, space, and opportunity for privacy. People decide when to share personal information. People use their environments.

AfÞliation

People participate in the life of the community. People interact with other members of the community. People perform different social roles. People have friends. People are respected. People live in integrated environments.

Attainment

People realize personal goals. People choose services.

Rights

People exercise rights. People afforded due process.

Health

People are free from abuse and neglect. People have the best possible health. People experience continuity and security.

Safeguards

People remain connected to natural support networks. People are safe.

exploration. Such techniques also statistically reduce the risk of Type I errors in subsequent univariate analyses. Multivariate Analysis of Variance (MANOVA) are used for the inferential statistics. VI.

RESULTS

Level of disability (MR S/P, MR M/M, and MI) was crossed with selected organizational characteristics of funding source, living arrangement, and size of organization. Descriptive statistics are presented for the sample for average percentage of outcomes reported by disability (see Table IV) and the average factor score reported by disability (see Table V). These descriptive statistics indicate how

84

J. Gardner, D. T. Carran, and S. Nudler TABLE IV AVERAGE PERCENTAGE OF OUTCOMES REPORTED BY DISABILITY LEVELa Disability MR Profound/Severe MR Mild/Moderate Mentally Ill Total

N

Mean % Outcome

(SD)

484 684 204 1372

60.04% 71.87% 67.88% 67.10%

(0.17) (0.17) (0.18) (0.18)

a

Twenty-Þve possible outcomes.

MR S/P have the lowest percentage of outcomes for the three disability groups, 10% lower than the MR M/M. Average factor scores appear similar among groups but warrant further investigation. The MANOVA for the seven dependent variables of outcome factor scores was performed for the three organizational characteristics. Three separate MANOVAs were run using SPSS General Linear Model investigating Disability × Funding Source, Disability × Living Arrangement, and Disability × Size of Organization. Results are presented for each MANOVA, followed by integrated univariate analyses for each of the seven factors. A.

Funding Source

WilkÕs criterion indicated that the combined seven outcome factor scores were signiÞcantly related to Disability [F(14, 1988) = 6.353, p < .001] and Funding Source [F(14, 1986) = 9.194, p < .001] but not to the interaction [F(28, 3581.735) = 1.228, p > .05]. The effects of Disability and Funding Source TABLE V AVERAGE FACTOR SCORES, REPORTED BY DISABILITY LEVEL Disability

Identity M (SD)

MR S/P MR M/M MI Total

3.07 (1.37) 3.08 (1.47) 3.45 (1.61) 3.44 (1.48)

Autonomy AfÞliation Attainment M (SD) M (SD) M (SD) 2.98 (1.12) 3.45 (0.85) 3.50 (0.81) 3.29 (0.98)

2.53 (1.46) 3.79 (1.46) 3.53 (1.59) 3.31 (1.59)

1.12 (0.67) 1.36 (0.63) 1.22 (0.62) 1.26 (0.65)

Rights M (SD)

Health M (SD)

Safeguards M (SD)

0.48 (0.78) 0.64 (0.85) 0.52 (0.85) 0.57 (0.83)

2.43 (0.68) 2.47 (0.69) 2.32 (0.75) 2.43 (0.69)

1.57 (0.55) 1.62 (0.55) 1.57 (0.59) 1.59 (0.56)

Note. MR S/P = Mentally Retarded Severe/Profound; MR M/M = Mentally Retarded Mild/ Moderate; MI = Mentally Ill.

85

PERSONAL OUTCOMES

TABLE VI MANOVA UNIVARIATE TESTS OF DISABILITY AND FUNDING SOURCE AND THEIR INTERACTION Independent Variable

Dependent Variable

df

Univariate F

Disability

Identity Autonomy AfÞliation Attainment Rights Health Safeguards

2, 999 2, 999 2, 999 2, 999 2, 999 2, 999 2, 999

9.68∗∗∗ 9.26∗∗∗ 34.23∗∗∗ 4.92∗∗ 2.28 2.16 0.28

Funding Source

Identity Autonomy AfÞliation Attainment Rights Health Safeguards

2, 999 2, 999 2, 999 2, 999 2, 999 2, 999 2, 999

22.96∗∗∗ 20.75∗∗∗ 36.23∗∗∗ 18.61∗∗∗ 11.83∗∗∗ 1.61 1.86

Disability × Funding Source

Identity Autonomy AfÞliation Attainment Rights Health Safeguards

4, 999 4, 999 4, 999 4, 999 4, 999 4, 999 4, 999

4.08∗∗ 0.72 0.99 0.69 2.99∗ 1.69 0.16

∗p

< .05. < .01. ∗∗∗ p < .001.

∗∗ p

were further investigated using univariate tests. Results of these analyses are summarized in Table VI. SigniÞcant univariate main effects were found among Disabilities for the outcome factors of Identity, Autonomy, AfÞliation, and Attainment. SigniÞcant univariate main effects were also found among Sources of Funding for the outcome factors of Identity, Autonomy, AfÞliation, Attainment, and Rights. SigniÞcant univariate interactions were found only for the outcome factors of Identity and Rights.

B.

Living Arrangement

WilkÕs criterion indicated that the combined seven outcome factor scores were signiÞcantly related to Disability [F(14, 2228) = 3.136, p < .001] and Living Arrangement [F(21, 3199.357) = 8.086, p < .001] and to the interaction

86

J. Gardner, D. T. Carran, and S. Nudler TABLE VII MANOVA UNIVARIATE TESTS OF DISABILITY AND LIVING ARRANGEMENTS AND THEIR INTERACTION Independent Variable

Dependent Variable

df

Univariate F

Disability

Identity Autonomy AfÞliation Attainment Rights Health Safeguards

2, 1120 2, 1120 2, 1120 2, 1120 2, 1120 2, 1120 2, 1120

4.05∗ 2.96∗ 29.71∗∗∗ 1.73 2.43 1.31 0.39

Living Arrangements

Identity Autonomy AfÞliation Attainment Rights Health Safeguards

3, 1120 3, 1120 3, 1120 3, 1120 3, 1120 3, 1120 3, 1120

21.75∗∗∗ 8.20∗∗∗ 27.54∗∗∗ 12.23∗∗∗ 22.76∗∗∗ 0.54 3.24∗

Disability × Living Arrangements

Identity Autonomy AfÞliation Attainment Rights Health Safeguards

6, 1120 6, 1120 6, 1120 6, 1120 6, 1120 6, 1120 6, 1120

1.51 1.48 2.28∗ 0.57 3.71∗∗ 0.36 0.87

∗p

< .05. < .01. ∗∗∗ p < .001.

∗∗ p

[F(42, 5228.575) = 1.45, p < .05]. The effects of the interaction of Disability × Living Arrangement was further investigated using univariate tests. Results of these analyses are summarized in Table VII. SigniÞcant univariate main effects between Disability were found for the outcome variables of Identity, Autonomy, and AfÞliation. SigniÞcant univariate main effects between types of Living Arrangements were found for all outcomes except Health. SigniÞcant univariate interactions were found for the outcome factors of AfÞliation and Rights.

C.

Size of Organization

WilkÕs criterion indicated that the combined seven outcome factor scores were signiÞcantly related to Disability [F(14, 1946) = 14.785, p< .001] and Size of Organization [F(28, 3509.624) = 3.457, p < .001] and to the interaction

87

PERSONAL OUTCOMES

TABLE VIII MANOVA UNIVARIATE TESTS OF DISABILITY AND SIZE OF ORGANISATION AND THEIR INTERACTION Independent Variable

Dependent Variable

df

Univariate F

Disability

Identity Autonomy AfÞliation Attainment Rights Health Safeguards

2, 979 2, 979 2, 979 2, 979 2, 979 2, 979 2, 979

22.05∗∗∗ 36.88∗∗∗ 92.95∗∗∗ 16.35∗∗∗ 4.92∗∗ 1.78 1.11

Size of Organization

Identity Autonomy AfÞliation Attainment Rights Health Safeguards

4, 979 4, 979 4, 979 4, 979 4, 979 4, 979 4, 979

3.78∗∗ 6.20∗∗∗ 2.41∗ 4.02∗∗ 5.43∗∗∗ 7.74∗∗∗ 1.10

Disability × Size of Organization

Identity Autonomy AfÞliation Attainment Rights Health Safeguards

8, 979 8, 979 8, 979 8, 979 8, 979 8, 979 8, 979

1.54 5.97∗∗∗ 2.14∗ 3.42∗∗ 1.11 1.99∗ 0.72

∗p

< .05. < .01. ∗∗∗ p < .001.

∗∗ p

[F(56, 5245.076) = 2.283, p < .001]. These Þndings were further investigated through univariate tests. Results of these analyses are summarized in Table VIII. SigniÞcant univariate main effects between Disability were found for the outcome variables of Identity, Autonomy, AfÞliation, Attainment, and Rights. SigniÞcant univariate main effects between Size of Organizations were found for all outcomes except Safeguards. SigniÞcant univariate interactions were found for the outcome factors of Autonomy, AfÞliation, Attainment, and Health. Integrated univariate results from the MANOVAs are presented for each outcome factor. 1. IDENTITY This factor was formed from questions reßecting client choices (see Table III). Results of the MANOVA analysis found SigniÞcant a signiÞcant interaction for

88

J. Gardner, D. T. Carran, and S. Nudler

Funding (see Fig. 1) and main effects for Living Arrangement and Size of Organization. Funding shows that regardless of disability, HCBW-funded individuals report signiÞcantly higher identity scores than ICF/MR-funded individuals. State funding, however, is different. State funding is also related to higher identity scores for MR M/M and MI, but not for MR S/P. MR S/P in state-funded organizations scored lower than those in HCBW but higher than ICF/MR. For Living Arrangement MR M/M had signiÞcantly higher identity scores than the other groups and Supervised Living has signiÞcantly lower identity scores than the other arrangements. For Size of Organizations, main effects were found, with signiÞcantly lower identity scores for MR S/P and for organizations with more than 500 clients. These Þndings suggest that MR S/P have fewer choices than the other two disability groups. Further, MR S/P choices were signiÞcantly limited in ICF/MRfunded agencies, supervised living facilities, and organizations serving more than 500 clients. 2. AUTONOMY This factor reßects the individualÕs privacy and intimate decision making. Results of the MANOVAs found the main effect of Disability to be signiÞcant for Funding and Living Arrangement and an interaction for Disability Size of Organization (refer to Fig. 1). SigniÞcant main effects resulted from the signiÞcantly lower Autonomy scores for MR S/P compared to the other disabilities. Across Disabilities, Autonomy was signiÞcantly lower in ICF/MR-funded and in supervised living sites. The interaction reßects the signiÞcantly lower score for MR S/P in organizations with more than 500 clients. These results reßect the lack of autonomy in ICF/MR organizations and supervised living facilities. These results suggest lower autonomy for MR S/P individuals in large organizations serving more than 500 individuals. 3. AFFILIATION This factor reßects the social community integration for individuals with disabilities. Univariate results indicated main effects for funding and interactions for Living Arrangements and Size of Organization (see Fig. 2). The main effect of disability for funding again indicates lowest within-group afÞliation scores for ICF/MR funding and also for the MR S/P. The interaction of Disability Living Arrangement indicates lowest afÞliation scores for MR S/P in family settings, unlike the MR M/M and MI, but all disabilities reported lower afÞliation scores in supervised living sites. Supported Living had higher afÞliation scores for both MR groups but not for MI. The interaction of disability by size resulted from the MR S/P having lower afÞliation scores as the size of the organization increased. This was in contrast to that reported for the MI group who had better afÞliation scores in larger organizations.

89

PERSONAL OUTCOMES 4.0 3.6 3.2 2.8

Mean AUTONOMY

2.4 2.0

Disability

1.6 1.2

MR P/S (M=2.97)

.8 MR M/M (M=3.46)

.4 0.0

MI (M=3.61)

> 0 (M =2 3 .3 )

)

5 .4

)

8 .3

=3

=3

(M

(M

0

0

50

20

1-

50

20

1-

)

0 .4

9 .3

=3

=3

(M

(M

00

50

-1

10

51


0 (M .9 )

=3 .5 2)

9)

1)

.6

.5

9)

=3

(M

=2

0

(M

.4

=3

=3

(M

0

50 1-

50

20

20 1-

0

(M

0 -1

50

10

51


50 0

1-

(M =2 1 .4 )

)

6 .2

)

5 .4

=3

=3

(M

(M

0

0

50

20

)

1 .4

3 .6

=3

=3

(M

(M

00

1-

-1

50

20

10

51


50 0 =1 .0 7)

8)

4)

.8

.3

=1

=1

(M

(M

0

(M

50

0 2)

3)

.4

.4

=1

=1

(M

(M

00

20

1-

1-

-1

50

20

10

51


500), and those funded by ICF/MR. 4. ATTAINMENT This factor reßects outcomes of choice and realization of goals. MANOVA Þndings for funding indicated signiÞcant main effects for both Funding and Living Arrangements, with an interaction for Size of Organization (see Fig. 2). Funding again shows signiÞcantly lower mean attainment scores for individuals funded by ICF/MR and also for individuals with MR S/P. Living Arrangement demonstrated that supervised living had signiÞcantly lower mean attainment scores than the other living arrangements. Size of Organization did not affect attainment scores for MR M/M. However, as the size of the organization increased above 100 clients, scores for MR S/P signiÞcantly declined. These results, again, emphasize the disadvantage that MR S/P individuals face in large ICF/MR facilities. 5. RIGHTS This factor reßects an individualÕs experience of his or her legal rights. Results from the MANOVA analysis found a signiÞcant interaction for Funding and also for Living Arrangement (see Fig. 3). SigniÞcant main effects were found for size of organization. HCBW funding had highest mean rights scores for all disabilities. However, MR M/M and MI individuals reported lowest rights scores in ICF/MR-funded agencies. In contrast, MR S/P individuals reported similar rights in ICF/MR and state-funded agencies. Living Arrangements showed that MR S/P and MR M/M scored similarly across disability levels with lowest scores found in supervised living. For the MI, significantly lower scores were found to be in sites other than the natural family. For Size of Organization, MR S/P reported signiÞcantly lower Rights than MR M/M and MI. Regardless of disability, organizations serving between 100 and 500 had the highest Rights ratings. These results support earlier Þndings. Overall, MR S/P reported signiÞcantly lower Rights regardless of funding. The other disability groupings, MR M/M and MI, did report lower Rights in the ICF/MR-funded facilities. Both MR groups reported fewer Rights in supervised living facilities, but larger organizations were reported to provide more Rights to their clients. 6. HEALTH The factor Health measured not only an individualÕs medical health but also his or her protection. Results from the MANOVA found no signiÞcant differences among Funding levels or among Living Arrangements. A signiÞcant interaction was found, however, for Size of Organization (see Fig. 3). Individuals with a

94

J. Gardner, D. T. Carran, and S. Nudler 1.4 1.2 1.0

Mean RIGHTS

.8 .6

Disability

.4

MR P/S (M=0.51)

.2

MR M/M (M=0.7)

0.0

MI (M=0.72) > 50 0 =0 (M

0

6)

.3

.6 8)

8)

9)

.7

=0 (M

=0 (M

.5

4)

.5

=0 (M

0

50 1-

20 1-

0

=0 (M

0 -1

50

20

10

51


0

50 1-

50

20

(M .3 3)

4)

7)

.5

)

.5

=2

=2

(M

=2

0

(M

.3

4)

.3

=2

=2

(M

0

0

(M

20 1-

50

0 -1

10

51