Developmental Disabilities 0866569596, 9780866569590

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DevelopmentalDisabilities: A Handbook for OccupationalTherapists

Developmental Disabilities: A Handbook for Occupational Therapists JerI)' A. Johnson Editor David A. Ethridge Co-Editor

I ~ ~ ~ ~&t! r;~g~ p New YOIIe London

DevelopmentalDi..sabilities: A Handbookfor OceupatiQtla{Therapistshasalsobeenpublishedas OccupationalTherapyin Health Can, Volume 6, Numbers2/3 1989. CI 1989 by The Haworth Press, fne. All rights reserved.No part of this work may be reproduced or utilized in any form or by any means,electronic or mechanical,including photocopying, microfilm and reoording, or by any information storageand tetrieval system. without permission in writing from the publisher.

First publishedby The Haworth Prc$.S, Inc., 10 Alice Street, Binghamton,NY 13904-1580 EUROSPAN!Haworth,3 Henriella Street, London WC2E 8lU England This edition published2012 by Routledge Routledge Taylor & FrancisGroup 711 Third Avenue New York, NY 10017

Routledge Taylor & FrancisGroup 2 Park Square.Milton Park Abingdon. axon OXI4 4RN

Ubrary of Cong~s5

Calaloglng·ln-PubltcatlonData

Developmentaldisabilities : a handbookfor occupational therapists'Jerry A . Johnson, editor: David A. Ethridge, ro-cditor. p. em. Has also beenpublishedas : Occupationaltherapyin heahhcare, v. 6, no. 113. Includesbibliographicalreferences . ISBN 0-86656-959-6 I. Developmentallydisabled- Rehabilitation. 2. Occupationaltherapy.I. Johnson,Jerry A. U. Ethridge, David A. (DNlM: I. Autism-rehabilitation.2. CerebralPalsy-rehabilitation. 3. Epilepsy- rehabilitation. 4. Mental Retatdation-rchabilitation.5. Occupational Therapy, WI

OC6OIH

RC570.2.D48 1989 616.8-ddO DNLM/DLC for Library of Congress

89-20012 e lP

Developmental Disabilities: A Handbook for Occupational Therapists CONTENTS FROM THE EDITOR

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FROM THE CO-EDITOR

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Frames of Reference: Guiding Treatment for Children with Autism MaryAnn L. Bloomer Catherine C. Rose

Introduction Ordering ConceptualInformation Choosinga Frameof Reference Literature Review of Autism Review of the OccupationalTherapyLiterature CaseStudy Example Establishinga TherapeuticEnvironmentfor Children with Autism Need for TheoreticalResearchwith the Autistic Population Going to the Source: The Use of Qualitative Methodology in a Study of the Needsof Adults with Cerebral Palsy Alice Kibele Lela A. Llorens

Descriptionof the Study Developmentof the Interview Guideline

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6 6 7 10 14 16 17 23 27

28 31

Data Collection Data Analysis Discussionof Data Conclusion

OccupationalTherapyand Epilepsy Carol Maier Clerico Introduction Descriptionof Epilepsy and SeizureTypes Medical/SurgicalManagementof Seizures The Role of the OccupationalTherapist Conclusion

Early Intervention: New Directions for Occupational Therapists RoseannC. Schaaf Laura N. Gitlin Introduction The Need for Early IntelVention PersonnelNeedsin the Early IntelVention Setting An IntelVention Approachfor OccupationalTherapists Conclusion

OccupationalTherapyin a RegionalComprehensive ServiceSystem David A. Ethridge PeterDimmer BeverlyHarrison DeniseDavis OvelView of OakdaleRegional Center ResidentialFacility SelVices Community Living SelVices Conclusion

32 33 34 36

41 41 42 53 55 73

75

75 77 79 82 85

91

92 94 101 103

On the Formative Stages of the Adult Screening Questionnaire: A Managerial Approach for Screening Adult Developmentally Disabled Clients Sharon Lefkofsky Tamara E. Avi-Itzhak

Introduction Background and Need The Instrument and Instrumentation Reliability Tests Conclusion

Intervention Strategies for Promoting Feeding Skills in Infants with Sensory Deficits Jane Case-Smith

Introduction Oral Sensory Mechanisms Feeding Problems in Children with Sensory Deficits InteIVention with a Sensory Involved Child Conclusion

Clinical Management of Dysphagia in the Developmentally Disabled Adult Margaret Stratton

Assessment Treatment Conclusion

107

108 109 115 119 127

129 129 130 132 134 140

143 144 147 151

Development and Implementation of a Dysphagia Program in a Mental Retardation Residential Facility Carol A. Lust Diane E. Fleetwood Elizabeth L. Motteler

153

Introduction 154 Phase I: Identify and Train the Swallowing Team 155 Phase II: Form Development and Staff In-seIVice Training 157 Phase III: Bedside Evaluation and ObseIVation 158

PhaseIV: VideofluoroscopicExamination PhaseV: TherapeuticImplementation Conclusion

Pre-Vocational Programming in a Pediatric Skilled Care Facility

JeanneE. Lewin

Introduction Setting and Population ProgramRationale ProgramObjective ProgramMethodologyand Strategies ProgramCritique/Results Conclusion

Developmental Growth in "ACTION": for the Adult Retarded

161 165 167

173 173 174 174 177 177 183 187

A Pilot Program

Jane T. Henick Helen E. Lowe

Background Program

189

189 190

AWro~

Results Discussion Implications for OccupationalTherapy

Options: An Occupational Therapy Transition Program for Adolescentswith Developmental Disabilities

JeanneJackson Allyn Rankin SueSiefken Florence Clark

Introduction Frameof Reference The Options Program Assessment The Curriculum Conclusion

1~

193 193 194

197

198 199 203 205 207 212

Grip Strength and Dexterity in Adults with Developmental Delays Carol S. Transon Christine K. Nitschke JamesJ. McPherson SandiJ. Spaulding Gail A. Rukamp Lisa M. Anderson Patricia Hecht Introduction Methodology Results Discussion Occupational Therapy in Operation Outreach: Community BasedApproach to Adapted Positioning Equipment Janet D. Stout Judy Atkins Carolyn Hamann Historical Overview The Indiana University Experience Mobile PositioningLaboratory CaseStudies Conclusion The Importance of Program Evaluation: Introduction to the Evaluation of a Community Program for Developmentally Disabled Adults Julie Shaperman An Exchangeof ServicesProgram for Adults with Developmental Disabilities: How Effective Was It? Julie Shaperman Charles E. Lewis Introduction EvaluationDesign and Methodology

215

216 216 218 221

227

228 229 230 234 235

237

241

241 243

Results Discussion Conclusion

247 253 255

BOOK REVIEWS

Integration of DevelopmentallyDisabledIndividuals into the Community,edited by Laird W. Heal, Janell I. Hany, Angela Novak Amado

Reviewedby Jane T. Herrick

Living Skills for Mentally HandicappedPeople,by Christine Peck and Chia SweeHong

Reviewedby Helen E. Lowe

The CognitiveRehabilitationWorkbook:A Systematic Approachto Improving IndependentLiving Skills in Brain Injured Adults, by PamelaM. Dougherty and Mary Vining Radomski

Reviewedby AnneB. Blakeney

Brain Injury Rehabilitation:A NeurobehavioralApproach, by RodgerL. Wood

Reviewedby Judith Dicker

Splinting the Burn Patient, by Carol Walters Reviewedby Cynthia Burt Introduction to Research:A Guidefor the Health Science Professional,by Carol K. Oyster, William P. Hanten, and Lela A. Llorens

Reviewedby ElizabethDePoy

Spinal Cord Injury: A Guide to Functional Outcomes in OccupationalTherapy,by S. Intagliata Reviewedby Mary W. McKenzie

257

259

260

262 264

265

267

ABOUT THE EDITORS Jerry A. Johnson, MBA, EdD, OTR, FAOTA, is Presidentof Context, Inc., and Editor of OccupationalTherapyin Health Care. She was Founder, Professor, and Director of the Occupational TherapyDepartmentat Boston University (1963-1971),and more recentlywas Professorand Elias Michael Director of Occupational Therapyat WashingtonUniversity in St. Louis. Sheservedas President of the American OccupationalTherapyAssociationfor over five yearsand is a recipient of both The EleanorClarke Slagle Lectureshipand the Award of Merit, AOTA's two highestawards.She servesas a national and internationallecturer and consultant. David A. Ethridge, PhD, OTR, FAOTA, is Director of Oakdale RegionalCenter,a large statefacility in Lapeer,Michigan for mentally retardedpeople. Dr. Ethridge also servesas an appointeeof AOTA and the AccreditationCouncil and has beenelectedto serve as Presidentof the Council for 1989. Dr. Ethridge has published extensivelyin the areasof researchand mental health and servesas a consultantto various mental health programsin severalstates.He has recently been appointedby the World Federationof Occupational Therapiststo serve as an expert advisor to the World Health Organization.

DevelopmentalDisabilities: A Handbook for OccupationalTherapists

FROM THE EDITOR

This volume representsa significant accomplishmentin bringing togethermany articles concernedwith the broad range of individuals with developmentaldisabilitiesand the variety of servicesthat are neededto addressthe multiple problemsconfrontedby individuals with developmentdisabilities handicapsand by their families. Given the scopeof this field, this collection is by no meanscomplete,or evencomprehensive,but it doesprovidebroadcoverageof the spectrumof problems confronted by patients and the many kinds of occupationaltherapyservicestheseindividuals need. David Ethridge,as Co-Editor, hasprovidedthe primary sourceof expertisein this volume. He and the contributing authorsdeserve recognition and appreciationfor their commitment,perseverance, and contributionsto this volumeon developmentaldisabilities.I am grateful to each of them and hope that these paperswill make a significant contribution to thoseoccupationaltherapistswho work with personshaving developmentaldisabilities. JenyA. Johnson Editor

© 1989 by The Haworth Press,Inc. All rights reserved.

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FROM THE CO-EDITOR

As an occupationaltherapist privileged to be appointed by the American OccupationalTherapy Association to sit as one of their representatives on the AccreditationCouncil on Servicesfor People with DevelopmentalDisabilities (ACDD) I have been frequently askedfor assistancein identifying programsor agencieswhich exemplify quality occupationaltherapy practice in the field of developmentaldisabilities. It is always difficult to answersuch queries. Likewise, we have frequently been asked for referencesto current literature which would assist new therapiststo acclimate to caseloadsof personswith developmentaldisabilities. Therecontinuesto be a severepaucity of professionalliterature dealing with occupational therapyand developmentaldisabilities. This volume is an attemptto addressboth questions;that of identifying programs and therapistsinvolved in quality practice and to add to the professionalliteraturein the field of occupationaltherapy and developmentaldisabilities. No single volume can ever contain all the subjectsdesiredbut an attempt has been made to cover the major disability groupings generally encompassedin the broad term, developmentaldisabilities: autism, cerebral palsy, epilepsy and mental retardation. Paperswere solicited which represented both institutional and communityserviceprograms;dealt with both children and adults; and rangedfrom mild to severelevels of impairment. © 1989 by The Haworth Press,Inc. All rights reserved.

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DevelopmentalDisabilities: A Handbookfor OccupationalTherapists

The initial threearticlesdeal with specific approachesto specific developmentaldisabilities; Bloomer and Rose on autism, Kibele and Llorenson cerebralpalsy, and Clerico on epilepsy.Institutional programs for persons with mental retardation are covered by Ethridge and colleagues,Stratton,Lust and colleaguesand Lewin. Communitybasedprogramsare describedby Case-Smith,Herrick and Lowe, Jackson and colleagues,and Stout and colleagues. Schaafand Gitlen looks at early interventiontool, Transonand colleaguesat grip strengthand dexterity and finally Shapermanand Lewis remind us of the importanceof programevaluation. Many of the contributorsto this volume are first-time authorsand it has beenparticularly gratifying to work with them to bring their ideasand manuscriptsto final form. It is through such seekingout of individuals willing to contributetheir time and energiesthat expansionof our literature is accomplished.My thanks to them for their many, many hours of hard work and their patiencein the lengthyreview and rewrite process.My thanksalso to the reviewers who contributed many good ideas to facilitate revisions when needed.It is our hopethat this seriesof articleswill prove useful to our field andwill encouragemore therapiststo expresstheir unique and valuableexperiencesso that we may all continueto learn.

David A. Ethridge Co-Editor

Frames of Reference: Guiding Treatment for Children with Autism MaryAnn L. Bloomer, OTR/L CatherineC. Rose, OTR/L

SUMMARY. Children with autism val)' greatly in their individual learningstyles,their problemareas,and their responseto treatment. Sincechildren with this diagnosispresenta relatively uniqueclinical picture, innovative approachesto treatmentare required. The purposeof this paperis to encouragetherapiststo employ a variety of treatmenttechniquesaccordingto the traditional framesof reference describedin the occupationaltherapyliterature (Tiffany, 1983; Matsutsuyu,1983; Ayres, 1979; Pedretti and Pasquelli-Estrada,1985). These include the following approaches:developmental,occupational behavior, sensol)' integrative, acquisitional, biomechanical, rehabilitative, and psychoanalytic.Each frame of referencewill be describedin terms of its theoreticalbase,stateof dysfunction, and focus of interventionin order to assistthe therapistin developinga structuredapproachin initiating treatment.In addition, a theoretical case studywill be presentedand each frame of referenceapplied with an emphasison principles for treatmentand samplelong and MaryAnn Bloomer receivedher BS in occupationaltherapyfrom Washington University in 1985 and a BS in educationand psychologyfrom WebsterUniversity Community Pediatric Services.Catherine Rose graduatedwith distinction from the WashingtonUniversity Programin OccupationalTherapyin 1987. Sheis presentlya staff therapistwith WashingtonUniversity Community PediatricServices, 4567 Scott Avenue,St. Louis, MO 63110. The authorswould like to thank Dr. Margo Holm for her articulatepresentation to the professionof the clinical definitions and usesof frames of reference with the developmentallydisabled population (Project for IndependentLiving, American OccupationalTherapyAssociation,1986). We would also like to extend our appreciationto the Program in OccupationalTherapy at Washington University for its supportin the preparationof this manuscript. © 1989 by The Haworth Press,Inc. All rights reserved.

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DevelopmentalDisabilities: A Handbookfor OccupationalTherapists

short term goals.Suggestionswill also be providedfor establishinga therapeuticenvironmentfor children with autism.

INTRODUCTION

Providing occupationaltherapyfor children with autismpresents a challengeto the clinician. Each child presentsa different clinical picture. The responseto therapeutictechniquesmay vary greatly from one child to the next. Therefore, the occupationaltherapist must try a variety of treatmentapproachesto help facilitate the child's maximumskill development.When one approachprovesto be ineffective or insufficient, the therapistshould considertrying new techniques.By using the frames of referenceas a treatment guide, the therapist is provided with concepts,definitions, statements,descriptionsand plansof action. This approachoffers structure to the task of treatingchildren with a complexpervasivedisorder. ORDERING CONCEPTUAL INFORMATION

Theories,framesof reference,and activities provide the basisfor planningand implementingoccupationaltherapyinterventions.According to Holm (1986), it is important to understandthe relationship of theseconstructswhen developingtreatmentplans for individuals with developmentaldisabilities. Holm defines theseterms as follows:

1. Theoriesconsistof concepts,definitions, statements,and postulatesthat describethe relationshipamongconcepts.A theory describesphenomenaso as to explain or predict. Examplesof theoriesmight include the theory of operantconditioning and theoriesof growth and development.A theory is universal in scope. Teachers,counselors,physical therapists, and other team membersmay use these theories, as do occupational therapists. 2. A frame of referenceis derived from a theory. In addition to

MaryAnn L. Bloomerand CatherineC. Rose

7

conceptsand definitions,it alsoincludesa guidefor action that is specific to a practitioner'sdomain. Intervention strategies are included to facilitate change.For example,a teacherand an occupationaltherapistmay both be working from a developmentaltheory base,but their interventionstrategieswill be quite different becauseof their specific areasof concentration. 3. Activities are tasks, techniques,projects, or processesdesignedto assistthe child in reachinga goal. Without a frame of referenceand theoreticalbase,the activity mayor may not be therapeutic(Holm, 1986). Table 1 summarizesthe following framesof referencefor occupational therapyintervention: developmental,occupationalbehavior, sensoryintegrative, acquisitional, biomechanical,rehabilitative, and psychoanalytic.Each frame of referenceis describedin termsof its theoreticalbase,stateof dysfunction,and focus of intervention. CHOOSING A FRAME OF REFERENCE

According to Holm (1986), many factors contributeto the therapist's decisionto utilize a particularframe of reference.Thesemay include the child's problem area, goal and allotted time for treatment, philosophyof the program,or the knowledgeand skills of the therapist. The therapistwill need to take into accountthe child's disability, age, problem areas, and personal preferencewhen choosinga treatmentapproach.The opinion of the parentwill also be a factor to consider. The therapy goals and the time line in which the therapist is working influencethe choiceof a frame of reference.The developmental,occupationalbehavior,sensoryintegrativeand biomechanical approachesall require long term treatmentinterventionfor the sequentialdevelopmentof skills. When the treatmenttime line is limited, the therapistmay chooseto utilize the acquisitionalor the rehabilitativeapproach. The programphilosophyand the knowledgebaseof the therapist are other determining factors when considering a treatment ap-

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DevelopmentalDisabilities: A Handbookfor OccupationalTherapists

TABLE 1. OccupationalTherapyFramesof Reference Theoretical Frame of Reference

Theoretical Frame of Reference

Acquisitional

Biomechanical

Theoretical base: Humans learn by interacting with a reinforcing environment through practice and repetition.

Theoretical base: Humans can develop physical sub· skills based on range of motion, strength and endurance.

State of Dysfunction: Unable to perform the skills needed for a given environment and/or to generalize skills to new conditions.

State of Dysfunction: Unable to perform the physical sub· skills necessary for activities of daily living such as range of motion, strength and endurance.

Focus of Intervention: Provide opportunities to practice specific skills with appropriate reinforcement in familiar and unfamiliar environments.

Focus of Intervention: Increase range of motion, strength and endurance through graded activities.

Evaluation: Skills check list.

Evaluation: Range of motion (goniometry) Manual muscle test Pinch/grip strength Endurance testing Position and body mechanics.

Establishment of Goals: STO: Acquire skills through practice in clinical setting LTO: Acquire skills that can be generalized to community environment.

Establishment of Goals: STO: Perform physical subskills in clinical setting. LTO: Perform physical subskills as needed for independent living skills.

proach. Certain treatmentprogramsor school settingshave a specific philosophyfrom which all professionalswork, e.g., developmental, acquisitional,or rehabilitation. The therapistmay use one frame of referencebecauseof personalexperienceand knowledge. Likewise, a therapist may elect not to use a certain approachbe-

MaryAnn L. Bloomerand CatherineC. Rose Theoretical Frame of Reference

Theoretical Frame Of Reference

Developmental

Occupational Behavior

Theoretical base: Humans develop tasks and roles according to a predictable sequence.

Theoretical base: Humans are biological, psycho· social, and cultural beings who spontaneously explore and master their environment.

State of Dysfunction: Unable to perform phYSical and daily living skills in an age appropriate manner.

State of Dysfunction: Unable to develop role require· ments in the areas of work, play, self care.

Focus of Intervention: Establish baseline level of perform· ance and provide activities along the developmental continuum.

Evaluation: Developmental assessment.

EstabliShment of Goals: STO: Perform a{le appropriate skills in the clinical setting. LTO: Perform age appropriate skills in the community environment.

9

Focus of Intervention: Acquire and perform skills of work, play and self care.

Evaluation: History taking Role assessment Inventory of activities of daily living, play skills Work assessment Establishment of Goals: STO: Develop life skills and personal interest while in the clinical setting. LTO: Develop life skills and personal interests that can be maintained in the community environment.

causehe or she lacks the skill developmentand credentials,e.g., sensoryintegrationor neurodevelopmental treatmentcertifications. It should be noted that more than one frame of referencemay be usedat the sametime to work on the presentingproblemareasprovided they are not conflicting. Also, when progresslevels off with one treatmentapproach,the therapistmay wish to initiate another approachto best facilitate the child's maximum skill development.

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DevelopmentalDisabilities: A Handbook/orOccupationalTherapists TABLE 1 (continued) Theoretical Frame Of Reference

Theoretical Frame Of Reference

Sensory Integration

Rehabilitation

Theoretical base: Humans organize sensory input through the central nervous system in order to respond to the environment in a meaningful way.

Theoretical base: Humans are capable of adapting to their limitations by learning new methods of performing through compensation or adaptive aids.

State of Dysfunction: Unable to respond appropriately to sensory input.

State of Dysfunction: Unable to demonstrate skills and behaviors necessary for independent functioning.

Focus of Intervention: Provide controlled sensory input through sensory motor activities and sensory integration techniques to ellicit an adaptive response

Focus of Intervention: Develop compensation techniques through patient education and training in environmental adaptations.

Evaluation: SI tests Sensorimotor history

Evaluation: Life skills evaluation Needs assessment

Establishment of Goals: STO: Exhibit an adaptive response to sensory input in the clinical setting. LTO: Exhibit an adaptive response to sensory input in the community environment.

Establishment of Goals: STO: Perform life skills in clinical setting using compensatory techniques. LTO: Perform life skills in community environment using compensatory techniques.

LITERATURE REVIEW OF AUTISM Autism was first describedby Leo Kanner in 1943. Since that time, severalresearchershave attemptedto identify the etiological factors and characteristicsof the condition (Rutter, 1978; Ornitz and Ritvo; 1976, Kolvin, 1971). The Diagnostic and Statistical

MaryAnn L. Bloomerand CatherineC. Rose

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Theoretical Frame Of Reference

Psychoanalytic Theoretical base: Human behavior is based on unconscious biological drives. These drives become conscious, are resolved and intrapsychic development continues. State of Dysfunction: Unable to control unconscious conflict which interferes with intrapersonal and interpersonal development. Focus of Intervention: Uncover unconscious conflicts which interfere with performance through expressive therapy. Eyaluation' Projective art techniques Role play Stress Inventory Establishment of Goals: STO: Project unconscious conflict through expressive media in the clinical setting. LTO: Resolve unconscious conflict for independent functioning in the community environment.

Manual of Mental Disorders (DSM III, 1980) lists the following criteria for the diagnosisof infantile autism: A. onsetbefore 30 monthsof age; B. pervasivelack of responsiveness to other people; C. grossdeficits in languagedevelopment; D. peculiar speech patterns such as immediate and delayed echolalia, metaphorical language, pronominal reversal (if speechis present); E. bizarreresponsesto variousaspectsof the environment,e.g.,

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DevelopmentalDisabilities: A Handbook/orOccupationalTherapists

resistanceto change,peculiar interest in or attachmentsto animateor inanimateobjects;and F. an absenceof delusions,hallucinations,looseningof associations, and incoherence,as in schizophrenia. Other factors that may accompanyautism often include perceptual and sensoryprocessingdisturbances,unusualmotility patterns, and mental retardation(Ramm, 1983). Wing (1976) summarizes evidencedocumentingthe presenceof autism in four or five of every 10,000children. Boys are affected up to four times as often as girls (Wing, 1976). Autism occursthroughoutthe world and in children from all backgrounds. To date, the exact causeof autism is unknown. A review of the literature on autism points to three main theoreticalcategoriesregarding the etiology of the disease(Wolkowicz, Fish, Schaffer, 1977): (1) the psychodynamicallyorientedtheories,(2) the organicexperientialinteractiontheories,and (3) the organic theories.The psychodynamictheoriesassumethat the autistic child is born physically normal, and that psychoticbehaviordevelopslater on because of maternal disinterestand lack of affection. The universality of such findings has beenquestioned(Margolies, 1977). The organic-experientialinteraction theoriescombine the viewpoints of both the psychodynamicand organictheories.Thesetheories can be divided into two categories:(a) thosewhich emphasize an unhealthymother-childrelationshipwhile allowing for vulnerability in the child, and (b) thosewhich stressdeviation in the child for which the mother does not compensate(Wolkowicz, Fish, Schaffer,1977). Thesetheoriesproposethat the various hereditary and biological factors are present,but that the parentsare still at least partially responsiblefor influencing the emergenceof the disorder. Today there is generalagreementamong most researchersthat autism is caused by organic brain pathology (Schanzenbacher, 1985). Schlopler (1965) noted that children with autism respond abnormallyto sensorystimulation,while Rimland (1964) hypothesizedthat the brain stemreticular formation somehowrelatesto the disorder. Both of these theories suggesta neuropathophysiologic basisfor the etiology of autism. Studiespursuingthis line of inves-

MaryAnn L. Bloomerand CatherineC. Rose

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tigation may be classifiedas thoseproposing(a) a sensoryprocessing disturbance,(b) aberrantcerebralspecializations,and (c) atypical memory, arousal,and attentionalmechanisms(Clark, 1983). In addition, Nelson (1984) discussesevidenceindicating that children with autism have a disorderin the modulationbetweensensoryinput and motor output, which may explain their inconsistentmotor responses. A numberof well executed studieshave suggestedthat perceptual disturbancesmay contribute to the etiology of autism (Clark, 1983). Many of theseneurophysiologicalfindings point strongly to the presenceof a vestibulardisorderin autism. When studying the effects of vestibular stimulation on rapid eye movement (REM) sleep, Ornitz and colleagues(1973) found that children with autism, unlike the control group, do not demonstratean increasein eye movementburst duration as a result of vestibular stimulation. These authors speculatedthat the disturbancesin modulation and registrationof sensoryinput associatedwith autism may be linked to a vestibulardisorder.Otherstudieshaveshownthat childrenwith autismhave diminishedposerotary nystagmusafter their vestibular systemis stimulatedby spinning(Piggot, 1979). The nystagmusis only inhibited when the child is spun in a lighted room; in a dark room, the child with autism has a normal amount of post rotary nystagmus.This finding may also indicate a defect in the integration of visual and vestibularstimulation. Other researchhas implied that children with autism have disturbancesin auditory processing.Studentand Sohmer(1978) usedauditory nerve and brain stem evokedresponsesto study the auditory processingof children with autistic traits. Resultsindicatedsignificantly different evoked responseswhen comparing the control group to the childrenwith autistic traits. The type of wavesfound in children with autism were characterizedby prolongedlatenciesindicting immaturity, which could possibly lead to distorted images of the outsideworld. Over the last 15 years, researchhas indicated abnormal hemisphericdominancepatternsin autism. DeLong (1978) found that l3 out of 17 children meetingmany of the criteria for autism demonstratedenlargementof the left ventricularsystem,especiallythe left temporal horns. Theseanatomicalmalformationswere in the area

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DevelopmentalDisabilities: A Handbookfor OccupationalTherapists

of the limbic system.Hier et aI., (1979) reportedthat the computerized tomography(CT) scansof 9 out of 16 autistic children demonstratedreversedsymmetryin the posteriorlanguageregion, which may contributeto the limited languageacquisitionin children with autism. Blastock (1978) noted that children with autism seem to prefer musical over verbal input, suggestingthat they may prefer processinginformation in the right rather than the left hemisphere. Lastly children with autism seemto show a nongeneticallyrelated higher incidenceof left-handedness, also indicating left hemisphere dysfunction(Boucher,1977; Colby and Parkinson,1977). Other studies have suggestedthat disturbancesin memory and attentionalmechanismsmay contribute to the etiology of autism. The possible defects in the limbic system previously mentioned (Delong, 1978) seemto implicate memorydisturbancesin children with autism. Hutt et aI., (1965) identified the child with autism as being physiologicallyover-stimulatedand thereforeunable to processsensoryinput. The authorshypothesizethat the repetitivestimulation often noted may serveas an arousal-reducingfunction. According to Ramm (1983), children with autism receive inadequate sensorystimulation and thereforecommonly seekit through atypical motility patterns.The observedhypersensitivityor hyposensitivity to stimuli may be due to a defect in the ability to selectively attend to a task (Grandin, 1984). Kootz et aI., (1982) suggestthat childrenwith autismavoid stimulationand resortto self-stimulating behaviorsto "flood sensoryreceptorsand insist on an unchanging environment.', In summary,it appearsthat neurophysiologicalfactors may contribute to the etiology of autism. There is strongevidencethat dysfunction of the sensorysystems,limbic system, arousal mechanisms, as well as aberrantcerebrallateralizationmay contributeto the emergenceof the disorder. REVIEWOF THE OCCUPATIONAL THERAPYLITERATURE

According to Levine (1981), only eight articles in the American Journal a/OccupationalTherapyfrom 1947-1981mention autism, and few additionshavebeenmadesincethat time. Although the use

MaryAnn L. Bloomerand CatherineC. Rose

15

of milieu therapy, behavior modification, play facilitation, and crafts have been describedin the occupationaltherapy literature, sensoryintegrativetherapyappearsto be the most frequently mentioned treatmentfor children with autism. The neurophysiological theoriesof etiology have formed the basisfor much of the occupational therapyresearchregardingthe sensoryintegrative treatment of children with autism. JeanAyres, the founderof sensoryintegrativetherapy,did much of her researchwith the learningdisabledpopulation;however,applications are now being madeto children with autism. In Sensory Integration and the Child (1979), Ayres identifies three aspectsof poor sensoryprocessingthat are noted in the child with autism: (1) sensoryinput is not being "registered"correctly in the child's brain, resulting in hypoactivity and hyperactivity to stimulation; (2) the child may not modulatesensoryinput well, especiallyvestibular and tactile sensations;and (3) brain dysfunction causesthe child to have little interestin performingconstructiveand purposeful activities. Activities involving movementexperiencesand deep touch sensationsare hypothesizedby Ayres to help the child with to the environment. autism createmore adaptive responses In one study, Ayres and Heskett(1972) used tactile and vestibular stimulationwith a sevenyearold girl with autismfor a six month treatmentperiod. Post treatmenttestingshowedconsiderablegains in perceptual-motorskills, auditory-languagefunctions, and reading. Likewise, Wolkowicz, Fish and Schaffer(1977) found that the use of sensoryintegrative therapywas beneficial to four children with autism in increasingsensoryintegrative functioning and improving behavioral and social skills after a four month treatment period. Ayres and Tickle (1980) found that children with autism who tend to be hyper-responsiveto touch and vestibularstimulation respond better to sensoryintegrative therapy than those who fail to orient to sensoryinput. All of thesestudiesappearto indicate the possibility that at leastsomechildren with autismbenefit from sensory integrativetherapy(Clark, 1983). Resultshavenot beenpublishedin the occupationaltherapyliterature which contradict the use of sensoryintegration for children with autism.However,in onestudy (Reilly, Nelson,Bundy, 1983),

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DevelopmentalDisabilities: A Handbookfor OccupationalTherapists

the spontaneous vocalizationsof 18 childrenwith autismwere compared after sensoryintegrative therapy and traditional fine motor activities. Contraryto expectations,fine motor, ratherthan sensorimotor activities, elicited significantly more variety of speech, greateraveragelength of utterances,and lessecholalic speech. The occupationaltherapyliterature also describesthe use of behavior modification, play facilitation, crafts, and music therapyin treating children with autism. In The DevelopmentalTherapist (1971), Kent describesthe use of behaviortherapyin treatmentof ch~ldren with pervasivedisordersand with children who display limited appropriatebehaviors.She suggeststhat occupationaltherapy can be utilized to modify behaviorthrough the use of positive reinforcers.Wehmanand Abramson(1976) reviewedthreetheories of play and describedeachin terms of their applicability to exceptional children. They reportedthat play activities can be usedeffectively to mediatethe developmentof adaptivebehaviorin children with behavioraldeficits. In two articles (1960 and 1961), Weston discussedthe use of crafts for children with autism, focusing on the featuresof craft activities in relation to behavioralproblems.He presentedselection criteria for using craft activities therapeuticallyto help facilitate "personality growth" for children with the disorder. Lastly, Farmer(1963) describedthe useof a musicalactivity programwith four girls diagnosedwith "childhood schizophrenia,"explaining that the girls learnedfrom the programand derived satisfactionand enjoyment. Although many treatment theories exist, little conclusive evidenceis available upon which to baseoccupationaltherapy treatment with the autistic population.Furthermore,eachchild with autism respondsto therapy in a different way, so the therapistmay needto try a variety of approachesto help maximizethe child's skill development. CASESTUDYEXAMPLE This theoreticalcasestudy is presentedto illustrate the useof the framesof referenceoutlined in this paper.Specific skill deficits and behavioralcharacteristicsof children with autism are included.

MaryAnn L. Bloomerand CatherineC. Rose

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Brian is a 9-year-oldmalewith a primary diagnosisof infantile autism.When encouraged,he is able to speakintelligibly with a vocabularyof 50 words. He does not initiate conversation with peers or adults. He does not play cooperativelywith peers.Spontaneousinteractionwith toys is nonpurposefuland self-stimulatory.Brian has a peculiar interestin preferredinanimateobjectsupon which he fixates for extendedperiodsof time. In occupationaltherapy, Brian avoids a variety of tactile sensationsand movementexperiences.When placedon moving equipment,he cries. Fine and grossmotor skills are within the 3-1/2 to 4-yearlevel. Muscle tone is low. Overall strength and enduranceare decreasedfor age level expectations.Brian is easily distractedand his decreasedattentionspan interferes with his ability to attendto a toy or activity for longer than 30 seconds.Under direct supervision and with physical assistance, he is able to interact appropriatelywith toys and in activities that are at the 3-4 year level. One of Brian'sproblems,the inability to independentlyplay with toys in a meaningfulway, will be utilized to illustrate the useof the framesof referencefor developingtreatmenttechniques.This problem was selectedfor illustration becauseof its implication in a child's interactionwith his environment.A child's interactionwith toys is importantfor the following reasons:a)it providesopportunities for increasedinteractionwith peersand caregivers;b)it allows for increasedopportunitiesto developfine/grossmotor and intellectual skills; and c)it providesthe child with opportunitiesto actively explore his physical environment. Table 2 outlinesthe useof eachframe for possibleremediationof this particularproblem. ESTABLISHINGA THERAPEUTICENVIRONMENT FOR CHILDREN WITH AUTISM The following generalsuggestionsare intendedto assistthe therapistin establishinga therapeuticenvironment.They do not provide specific suggestionsfor individual problemsor addressa particular

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TABLE 2. CaseStudy of Brian Theoretical Frame of Reference Developmental

Theoretical Frame of Reference Occupational Behavior

Assumed Cause for Problem: Brian cannot independently play with a toy because he is developmentally delayed in the acquisition of age appropriate play skills.

Assumed Cause for Problem: Brian cannot independently play with a toy because he has not developed the self care, work, and play Skills required for his role as a child and a student.

Principle for Treatment: Participation in play activities progressing along the developmental continuum will result in more independent play at an age-appropriate level.

Principle for Treatment: Utilizing a variety of self-care. school, and play activities in his role as a child will give Brian practice in developing appropriate play skills and result in more independent play.

Short-Term Goal: By January 1, Brian will play with a toy (4 year level) with only verbal cues and no physical assistance.

Short-Term Goal: By January 1, Brian will play with a classroom toy with only verbal cues from a therapist.

Long·Term Goal' By June 1, Brian will demonstrate the ability to play independently with a given toy, game, or piece of equipment for a three minute time period.

Long-Term Goal' By June 1, Brian will demonstrate the ability to play independently with a given toy, game or piece of equipment for a three minute time period.

frame of reference.The intention is to assistthe therapistin developing a structuredenvironment,which is necessarywhen initiating treatmentfor children with autism. 1. Review all availablerecordsand note all important information including previousillness, medications,medicalreports, treatmentrecords,and level of progressachieved.Keep notations in a file for quick reference.

MaryAnn L. Bloomerand CatherineC. Rose Theoretical Frame of Reference

Theoretical Frame of Reference

Sensory Integration

AcquiSitional

19

Assumed Cause for Proglem: Brian cannot correclty "register" sensory input thus he has little interest in performing purposeful play activities.

Assumed Cause for Problem: Brian cannot play independently with a toy because he has not acquired the necessary cognitive and motor skills.

Principle for Treatment· Participation in activities which involve controlled sensory input will improve Brian's abillity to respond adaptively to his environment, and result in an increased ability to play independently.

Principle for Treatment: Repetition and practice in play skills of graded difficulty will improve Brian's ability to play independently.

Short-Term Goal: By January 1, Brian will initiate play on one piece of equipment in the occupational therapy clinic designed to provide tactile stimulation.

Short-Term Goal: By January 1, Brian will be able to string four 1" beads with only verbal cues from the therapist.

Long-Term Goal' By June 1, Brian will demonstrate the ability to play independently with a given toy, game, or piece of eqUipment for a three minute time period.

Long-Term Goal' By June 1, Brian will demonstrate the ability to play independently with a given toy, game, or piece of equipment for a three minute time period.

2. Consult with parents,caregiversand teachersto discussthe child's history, habits, behavior patterns,preferences,nonpreferredactivities, motivators,and child's mode of communication (requestexamples). 3. Discussanticipatedgoals. What does the parent/teacherexpect this child to achievein occupationaltherapy? 4. Observethe child 2-3 times in different settings(if possible). Inquire if the behaviordemonstratedis typical. 5. Determinethe teacher'sand staff's most effective methodsof interactionwith the child.

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DevelopmentalDisabilities: A Handbookfor OccupationalTherapists

TABLE 2 (continued) Theoretical Frame of Reference

Theoretical Frame of Reference

Biomechanical

Rehabilitation

Assumed Cause for Problem: Brian has not developed independent play skills because of this poor upper extremity strength and endurance.

Assumed Cause for Problem: Brian is unable to adapt to his environment therefore the environment must be adapted for him so that he is able to play independently.

Principle for Treatment: Participation in activities to increase upper extremity strength and endurance will improve Brian's fine motor development and result in more independent play.

Principle for Treatment: By adapting the environment to decrease the external distractions, Brian will be able to attend to a toy and consequently play independently.

Short-Term Goal: By January 1, Brian will improve his grip and pinch strength by five pounds each.

Short-Term Goal: By January 1, Brian will play independently with a toy for one minute in a small treatment room with only a table, the toy, and the therapist.

Long-Term Goal: By June 1, Brian will demonstrate the ability to play independently with a given toy, game, or piece of equipment for a three minute time period.

Long-Term Goal: By June 1, Brian will demonstrate the ability to play independently with a given toy, game, or piece of equipment for a three minute time period.

6_ Participatewith the child in the classroomsetting2-3 times in order to help the child familiarize himself/herselfwith the therapist. 7. Evaluate the child using clinical observations,informal assessmenttools (checklists), or formal tests (when applicable). 8. Select realistic occupational therapy goals in conjunction

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Theoretical Frame of Reference Psychoanalytic Assumed Cause for Problem: Brian is unable to play independently because he is not able to control biological drives or resolve intrapsychic conflicts.

Principle for Treatment: Through projective means, Brian will reveal unconscious conflicts which interfere with performance in independent play skills.

Shon-Term Goal: By January 1, Brian will express his frustrations in a finger painting activity under the supervision of the therapist.

Long-Term Goal: By June 1, Brian will demonstrate the ability to play independently with a given toy, game, or piece of equipment for a three minute time period.

with the parent'sand teacher'ssuggestions.Selectthe appropriate frame of referenceto achievethesegoals. 9. Develop a treatmentroutine for each child. Be as consistent as possible,especiallyin the familiarization stage. 10. Introduce equipmentin gradual steps,especiallyif the child has an aversivereaction to a particular sensation.Grade the activity from verbal introduction to increasedphysical participation. 11. Keep the physical aspectsof the treatmentenvironmentcon-

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DevelopmentalDisabilities: A Handbookfor OccupationalTherapists

sistent,i.e., regular treatmenttime, location and position of the table and equipment. 12. Clear the work area of all other materials;remove as many distractionsas possible.Placeonly 1-2 objectsin front of the child at a time. Use hand over hand assistanceif required. Select an appropriatesized table or mat dependingon the child's age, ability and tolerance. 13. Use oneself as a therapeutictool. Place one's body in the most advantageousposition, i.e., somechildren will benefit from havingvisual feedback.Othersperform betterwhen the therapistgives hand overhandassistanceand providesphysical clues. 14. Use a low modulatedvoice. Talk with the child about the activity. Praiseand encouragementare important despitethe child's inability to provide consistentverbal feedback. 15. Break down the tasks and verbalize the steps as the child progressesthroughthe activity. Reduceverbal promptsas the child becomesmore independent. 16. Alternate betweenpreferredand more challenging(or stressful) activities. Treatment sessionsshould conclude with a pleasantpreferredtask. 17. Use a variety of calming techniquesto determinethe most effective methods.Thesepreferredtechniquesmay be useful in time of agitation or following stressfulactivities. 18. Modify the length of the treatmentsessiondependingon the child's tolerancelevel and abilities. 19. Keep detailed daily progressnotes describingthe goals addressed,the child's response,his performancelevel, behavior, and the teacher'sremarks. 20. Anticipate a longer than averageadjustmentperiod, frequent lapsesin abilities, behavior changesdue to illnessesor absences,and gradualor fluctuating progress. 21. Maintain open communicationwith parents and staff who can give daily feedback. Use a log to communicatewith home if necessary.Work as a team memberreinforcing mutual goals.

MaryAnn L. Bloomerand CatherineC. Rose

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NEED FOR THEORETICAL RESEARCH WITH THE AUTISTIC POPULATION The effectivenessof the given framesof referenceand suggested treatmenttechniqueshave not beenempirically supported.According to Ottenbacherand York (1984), "the overall validation of therapeuticprogramsemployed withparticular patient populationscan only occur through the accumulationof evidencein support of a particular theoreticalorientation." In most instances,the development of such a body of knowledge requires the use of traditional group comparison research,which involves assembling a large number of subjectsand randomly assigningthem to experimental and control groups. Such researchis often difficult when the popuwidely dispersedindilation of interest consistsof heterogeneous, viduals, as is the casefor children with autism. In such cases,an alternateresearchmethod may need to be utilized, such as singlesubjectresearchdesigns. As clinicians, we must be not only concernedwith quantitatively testing theory-derivedhypotheses,but we must also demonstrate the validity of specific treatmenttechniquesas applied to individual patientsin a wide variety of environments.Single subjectresearch is an effective way of documentingpatient progresswhile also establishing therapeuticaccountabilityin a systematicand objective manner (Ottenbacherand York, 1984; Campbell, 1988). In addition, this method allows the therapist flexibility to make changes when a given treatmentprotocol is not maximally beneficial. The researcheralso hasthe option of groupingtreatmentresultsto assess the overall effectivenessof occupational therapy programming. Such a researchdesignmay prove to be well suitedfor studyingthe effects of treatmentfor children with autism. Furthermore,the insights gained may assist the researcherin developing theoretical hypothesesfor further experimentalresearch. In closing, the authorswould like to encourageoccupationaltherapiststo engagein both theory-basedempirical research(when possible) and single-subjectresearchdesignsthat will ultimately provide the necessaryknowledge and theoretical foundation for developingappropriatetreatmentinterventionsfor children with autism.

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REFERENCES American PsychiatricAssociation. (1980). Diagnostic and statistical manual of mentaldisorders (3rd ed.). Washington,DC: Author. Ayres, A. J. (1979). Sensoryintegration and the child. Los Angeles: Western PsychologicalServices. Ayres, A. J., & Heskett, W.M. (1972). Sensory integrative dysfunction in a young girl. J. of Autism Child Schizophr,2(2), 174-181. Ayres, A. J., & Tickle, L.S. (1980). Hyperresponsivityto touch and vestibular stimuli as a predictorof positive responseto sensoryintegrationproceduresby autistic children. Am J Occup Ther, 34(6),375-381. Blastock, E.G. (1978). Cerebralasymmetryand the developmentof early infantile autism.J Autism Child Schizophr,8, 339-353. Boucher,J. (1977). Hand preferencein autistic children and their parents.J Autism Child Schizophr,7, 177-187. Campbell, P.H. (1988). Using a single-subjectresearchdesign to evaluate the effectivenessof treatment.Am J Occup Ther, 42(1), 732-738. of autism and its impliClark, F. (1983). Researchon the neuropathophysiology cations for occupationaltherapy. Occup Ther J of Research,3(1), 3-22. Colby, K.M., & Parkinson,C. (1977). Handednessin autistic children.J Autism Child Schizophr,6, 157-162. De Long, G.R. (1978). A neurophysiologicalinterpretationof infantile autism. In M. Rutter & Shopler(Eds.),Autism:A reappraisalof conceptsand treatment. New York: Plenum. Farmer,R. (1963). A musicalactivities programwith young psychoticgirls. AmJ Occup Ther, 17, 116-119. Grandin, T. (1984). My experienceas an autistic child and review of selected literature.J Orthomol Psychiatry, 13(3), 144-174. Hier, D., LeMay, M., & Rosenberger,P. (1979). Autism and unfavorableleftright asymmetriesof the brain. J Autism Dev Disord, 9, 153-159. Holm, M. (1986). Framesof reference:guidesfor action, occupationaltherapist. In H. Schmidt (Ed.), Project for IndependentLiving in OccupationalTherapy. Rockville, Maryland: American OccupationalTherapy Association, pp. 6978. Hutt, S.L, Hutt, c., Lee, D., & Ounsted,C. (1965). A behavioraland electroencephalographicstudy of autistic children. Journal of Psychiatric Research,3, 181-197. Kent, C. (1971). Psychosocialdevelopment:Function and dysfunction. In B. Banus (Ed.), The developmentaltherapist-a prototype of the pediatric occupational therapist (pp. 213-275). Thorofare, NY: Slack. Kolvin, I. (1971). Psychosesin childhood-A comparativestudy. In M. Rutter (Ed.), Infantile autism: Concepts, characteristics, and treatment. London: Churchill Livingstone. Kootz, LP., Marinelli, B., & Cohen, D.l. (1982). Modulation of responseto

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environmentalstimulation in autistic children.J AutismDev Disord, 12, 185192. and treatmentof autistic children in Levine, C.R. (1981). Surveyof assessment occupationaltherapy. Unpublishedmaster'sthesis, Washington University, St. Louis, MO. Margolies, P.J. (1977). Behavioralapproachesto the treatmentof early infantile autism: A review. PsycholBull, 84(2), 249-264. Matsutsuyu,J. (1983). Occupationalbehavior approaches.In H.L. Hopkins & H.D. Smith (Eds.), Willard and Spackman'soccupationtherapy (6th ed.) (pp. 129-134).Philadelphia,PA: J.B. Lippincott. Nelson, V. (1984). Children with autism and other peIVasivedisordersof developmentand behavior. Thorofare,NJ: Slack. Ornitz, E.M., Forsythe,A.B., & de la Pena,A. (1973). The effect of vestibular and auditory stimulation in the rapid eye movementsof REM sleep in normal and autistic children. Arch Gen Psychiatry,29, 786-791. Ornitz, E.M., & Ritvo, E.R. (1976). The syndromeof autism: A critical review. Am J Psychiatry,133, 609-621. Ottenbacher,K., & York, J. (1984). Strategiesfor evaluating clinical change: Implications for practiceand research.Am J Occup Ther, 38(10), 647-659. S. (1985). Foundationsfor treatmentof physiPedretti, L., & Pasquelli-Estrada, cal occupationaltherapypracticeskills for physicaldysfunction(2nd ed.). St. Louis, MO: C. V. Mosby. Piggot, L.R. (1979).Overview of selectedbasicresearchin autism.J Autism Dev Disord, 9,199-218. Ramm, P. A. (i983).theoccupationaltherapyprocessin specific pediatric conditions. In H.L. Hopkins & H.D. Smith (Eds.), Willard and Spackman'soccupational therapy(6th ed., pp. 589-641). PhiladelphiaPA: J.B. Lippincott. Reilly, c., Nelson, D., & Bundy, A. (1983). Sensorimotorversus fine motor activities in elicitin" vocalizationsin autistic children. Occup Ther J of Research,3(4), 199-212. Rimland, B. (1964). lrifantile autism. New York: Century Crofts. Rutter, M. (197SJ.Diagnosisand definition of childhood schizophrenia.J Autism Child Schlzophr,8, 139-161. Schanzenbacher, K.E. (1985). Diagnosticproblems in pediatrics.In P. Clark & A. S. Allen (Eds.),Occupationaltherapyfor children (pp. 78-110). St. Louis, MO: C.V. Mosby. Schlopler, E. (1965). Early infantile autism and receptor processes.Arch Cell Psychiatry,113, 1183-1189. Student,M., & Sohmer,H. (1978). Evidencefrom auditory nerve and brainstem evoked responsesfor an organic brain lesion in children with autistic traits. J Autism Child Schizophr,8, 13-20. Tiffany, E. (1983). Psychiatryand mental health. In H.L. Hopkins & H.D. Smith (Eds.), Willard and Spackman'soccupationaltherapy(6th ed.) (pp. 267-333). Philadelphia,PA: J. B. Lippincott. Weston, D. (1960). TherapeuticCrafts. Am J Occup Tlzer, 14, 121-122.

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Weston,C. (1961). The dimensionsof crafts. Am J Occup Ther, 15, 1-5. Weyman, P., & Abramson, M. (1976). Three theoretical approachesto play: Applications for exceptionalchildren. Am J Occup Ther, 30,551-558. Wing, L. (1976). Early childhoodautism. New York: PergamonPress. Wolkowicz, R., Fish, J., & Schaffer,R. (1977). Sensoryintegrationwith autistic children. Can J Occup Ther, 44(4), 171-175.

Going to the Source: The Use of Qualitative Methodology in a Study of the Needsof Adults with CerebralPalsy Alice Kibele, MS, OTR

Lela A. Llorens, PhD, OTR/L, FAOTA

SUMMARY. A small but growing body of occupationaltherapy literature identifies the value of qualitative researchmethodology, which is useful with relatively unstudiedor complex phenomena. This paperdescribesthe use of qualitative researchto obtain insight into the world of adultswith significantly limiting cerebralpalsy, as seen from their own perspective.The first author conductedextended,guided interviewswith five adults who live independently with attendantcare. The resulting data, synthesizedinto recurring themes,suggestedguidelinesfor occupationaltherapy practice. In this paper,the study methodologyis describedin depth, and directions for further qualitative and quantitativeresearchare presented. A growing numberof authorshave cited the value of qualitative researchas a valid sourceof information to direct occupationaltherapy practice(Yerxa, 1983; Kielhofner, 1982, 1983; Merrill, 1985). Merrill (1985) clarified that while quantitative methods facilitate Alice Kibele is Director of OccupationalTherapy,Children'sHospital at Stanford, 520 Sand Hill Road, Palo Alto, CA 94304. Lela A. Llorens is Professor, Chair and GraduateCoordinator,Departmentof OccupationalTherapy,San Jose StateUniversity, One WashingtonSquare,San Jose,CA 95192-0059. The authorsacknowledgethe assistanceof Karen Diasio Serrett,Gordon Burton, and Edward V. Robertsin the preparationof the study. The study on which this paperis basedwas completedin partial fulfillment of the requirementsfor the degree,Masterof Sciences,completedby the first author at San JoseStateUniversity, May, 1986.

© 1989 by The Haworth Press,Inc. All rights reserved.

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DevelopmentalDisabilities: A Handbookfor OccupationalTherapists

analysisof known relationships,qualitative methodsallow discovery of previouslyunknownrelationships.Quantitativemeasuresare usedto comparethe outcomesof treatmentapproachesand the utilization of particulardevicesor adaptations,when thoseapproaches, devicesand adaptationsare known to the researcher.Quantitative methodologyis usedto test existing theories. Qualitativemethodologyis usedwhen the phenomenato be studied representa larger, unknown entity, such as a culture. Adults with significantly limiting physicaldisability suchas cerebralpalsy who live independentlywith attendantcarerepresenta culture about which thereis little documentedresearch.The purposeof this paper is to presentthe qualitativemethodologyusedin a studythat sought to define the needsof adults with significantly limiting cerebral palsy. There is a small body of occupationaltherapy literature which definesaspectsof interventionwith infants and children who have cerebralpalsy. Adults with significantly limiting cerebralpalsyrepresenta populationaboutwhich little is known, and little has been written in occupationaltherapyor other literature to describetheir needs. DESCRIPTION OF THE STUDY

StudyRationale

The study describedhere was undertakento obtain insight into the world of adults with significantly limiting cerebralpalsy, who have had experiencewith servicesprovided in traditional medical! rehabilitationsettingsand in independentliving skills agencies. Interest in this population was heightenedby the first author's clinical experienceas an occupationaltherapy consultantto community-based,publicly-funded agenciesserving individuals with developmentaldisabilities and their families. The first author was introducedto numbersof adultswith significantly limiting cerebral palsywho had successfullymadea transitionfrom living situations in which all their care needswere met, to the less restrictive environment of independentliving with attendantcare. Other adults, with similar or milder symptomsof cerebralpalsy, continuedto live

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in restrictive environments,while expressinga desire to be more independent.An overridingquestionfor the first authorwas the role that experienceswith services,including occupationaltherapy,had played in the lives of thosewho had successfullymadethat transition. It was also clear that knowledge about the special culture of childhoodand adulthoodof peoplewith cerebralpalsy is neededby occupational therapistsand others who serve this population. In Kielhofner (1983), Yerxa noted that an understandingof the patient's sourcesof satisfactionand view of himself in his world is critical to insuring active participationof the patient in therapeutic goal-settingand decision-making. A numberof authors,including Kielhofner (1983), cited the importanceof competencybehaviorsin the developmentalprogression from childhood to independent,satisfying adulthood.The first author of the current study was fascinatedto know more about the developmentof adults with severe motor disabilities, for whom competencyas we know it in many basic developmentalskills had neveroccurred.In Kielhofner (1983), Kielhofner and Miyake proposed a "relativity theory of competence."They suggestthat in order to define a good performancefor an individual with function radically altered by diseaseor disability, one must acknowledge "the perspective(howeverlimited or deviant) of the individual and the ability of anotherto recognizeand appreciateperformancefrom the sameperspective"(page262). The first author's observationsfrom outside the world of the study population and a review of literature generatedinsufficient information on which to base hypothesesthat could be studied quantitatively. A number of questionswere raised, however, that were appropriatefor qualitative study. The following were among the identified questions: 1. What is the role of occupationaltherapywith adults who are significantly limited by cerebralpalsy? 2. What are the perceptionsof adults with significantly limiting cerebralpalsy regardingtheir needsfor assistanceto achieve and maintain independentliving?

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DevelopmentalDisabilities: A Handbookfor OccupationalTherapists

Selectionof Subjects

The participants who contributed data for the study are five adults, three males and two females,who live independentlywith attendantcare in denselypopulated,urban and suburbanneighborhoodsof AlamedaCounty, in the San FranciscoBay areaof California. They ranged in age from thirty-five to forty-seven at the time the interviews were conducted.The two female participants are married to men with similar physical disabilities; of the males, one counts a similarly-disabledmale roommateas his significant other. One male lives with an able-bodiedfemale friend and an able-bodiedmale attendant.The final subject,a male, lives with an able-bodied,female attendant. All participantshave beendiagnosedas having cerebralpalsyby the physiciansthey identified as most knowledgeableabout their care. All are caucasian.Three participantsrely solely on public financial assistance,which consistsof social security,supplemental social security (SSI), and MediCal (California's version of Medicaid). The county pays for a limited numberof hours of attendant care for three of the participants.One participant, employedfulltime, and anotherwhosehusbandis a full-time employee,are ineligible for any public financial assistance. All participantsare significantly limited in at least two of the following areas:mobility, communication,and useof the handsfor functional tasks, including self-care.All rely on attendantcare to maintain their independencein the community. None of the participantsdisplayedevidenceof othersignificantly limiting disability. They varied in terms of cognitive potential or intellect, as evidencedby verbal expressionand ability to conceptualize. However, all were able to relate meaningful experiencerelative to the interview questions,and all evidencedsufficient intellect and functional ability to manageindependentcommunity living with attendantcare. The first authorhad had contactprior to initiation of the studywith threeof the participants.Contactwith two had beenmadeon a professionalbasisat the time of their movesfrom a shelteredliving situationto independentliving with attendantcare. The first authorhad beenclosely involved in thosemoves,addressing issuesincluding identification of communityresources,durable

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medical equipmentand training of new attendants.In addition, the first authorhad beenpreviouslyinvited to sharein birthdaycelebrations and other social occasionsin the homesof thoseparticipants. The third study participantpreviouslyknown to the first authorwas a co-worker in a publicly-funded agencyproviding case management servicesand funding for individuals with developmentaldisabilities. Names of the two remaining study participantswere obtained following consultationwith a community agencyinvolved in consumer-initiatedresearchaddressingthe needsof individuals with a variety of disabilities. Those two participantswere previously unknown. Prior knowledgeof and social easewith studyparticipantsis consistent with qualitative, ethnographicresearch,in which the researcherseeksto becomeemersedin the daily lives and culture of membersof the populationbeing studied (Kielhofner, 1981; Sharrott in Kielhofner, 1983). DEVELOPMENTOF THE INTERVIEWGUIDELINE The first authordevelopedthe interview guidelinebasedon clinical experienceand review of the literature(seeAppendix). The general areasto be queriedwere determinedaccordingto their appropriatenessor relevanceto the ability of individuals with disabilities to live independently.Thosegeneralheadingsfinally selectedincluded: living situation (presentand past); systemsand servicedelivery (independen"tliving and medical/rehabilitationservices,including occupationaltherapy);childhood;family; relationshipswith others; life tasks (including self-care,work/volunteerexperience, and use of leisuretime); and self-description. Under eachgeneralheadingwas a list of specific questions,designedto guide the recollectionsof the studyparticipant.Final revisions to the instrumentfollowed review by occupationaltherapy peers,the thesis advisor, and readers,including an individual significantly limited by a disability other than cerebralpalsy.

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DevelopmentalDisabilities: A Handbookfor OccupationalTherapists

DATA COLLECTION

Following initial introductionof the study goalsand generaloutline of the interview, each individual was askedto sign an agreement to be a study participant. The participant was also asked to sign a consentform which allowed the first authorto seekconfirmation of diagnosisfrom the participant'sphysician. Data were gatheredby meansof extendednon-directedinterviews, conductedby the first author, using the interview outline describedabove. Each interview sessionlasted from one and one half to three and one half hours. Sessionswere scheduledin locations such as the participants' homes and place of employment. Sessionswere scheduledat the mutual convenienceof the first author and participants,and occurredin sequenceuntil all interview questionshad beenaddressed. As is typical of phenomenologicalmethodology,the intent of the study was to createa broadly-basedoutline to guide the interview process. During the actual interview process,conversationwith study participantsfrequently strayedfrom the outline, as they offered insights on mattersof particular importanceto them. In such instances,the interview outline servedas a frameworkto which the interviewerand participantreturned.The interview insureda legitimate database,since all participantswere given the opportunityto respondto the samequestions. In addition, the interview sessionschangedwith eachsucceeding session,in instanceswhen participantsoffered unsolicitedinformation of obvious value to them. When such new information was offered, the first author restructuredsubsequentinterview sessions to allow sharing of experienceregarding the samesubject by the other participants. For example,the first author did not initially include interview questionsspecifically about sexuality. However, when discussing relationships,self-caretasks,and unmetneeds,a numberof participantsvolunteeredvaluable insights regardingtheir own sexuality. Becauseinterviews with the five participantswere conductedconcurrently, but were initiated sequentially,the first authorwas able to incorporate additional questionsfor subsequentsessionswith

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other participantsto encouragesharingof their insightsaboutsexuality. With participants'prior knowledgeand consent,interviewswere audio recordedand the participants'responseswere repeatedin order to assurethat the responseswere adequatelyrecorded,and to easelater transcriptionof data. There were a total of forty-two interview sessionsfor all five participants,rangingfrom six sessionsfor one participantto eleven sessionsfor another.The averagenumberof interview sessionsper participantwas 8.4, with an averageof 15.7 total hours spent in interviewswith eachparticipant.Total time spentin interviewswas just over 80 hours. Interview sessionswere informal, and often included the sharing of a snackor coffeewith the participant,aswell as informal discussion with the participant and others present(spouses,attendants, friends), either prior to or at the conclusionof the interview sessions. Such informal socialization,and accompanyingtwo of the participantsto local restaurantsfor meals following a number of interview sessionsgave additional insight into relevant issues,including the participants'interactionswith strangers,and the everyday challengesof environmentalaccessibility. This collection of data pertainingto a single issuefrom severalsourcesis referred to as triangulation(Kielhofner, 1982; Merrill, 1985), and strengthens the study'svalidity. DATA ANALYSIS

Audio recordedinterviewswere transcribedverbatimby the first author,with interview questionslending form and order to the content. With the transcriptionprocesscompleted,typewritten copies werecut into sections,to allow comof eachparticipant'sresponses pilation of datafrom all participantsin responseto interview guideline sectionsand specific questions. The text of the data sectionwas then preparedby noting participants'responsesto eachsectionand questionin turn. Relevantinformation was also included that was noted following informal interviews with participants'significant others and attendants,and during outings with participants.During the courseof preparation

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DevelopmentalDisabilities: A Handbookfor OccupationalTherapists

of the text, and acrossthe boundariesof specific areasof the interviews with all participants,the first authornotedrecurrenceof similar ideas,often statedby participantswith particularfervor. Notes were madeof eachsuch important observationor statementon an individual note care.At the time of completionof the datacompilation into typewritten form, there existed a sizeablecollection of cards,eachbearinga particularly interestingobservation. Thoseindivid.ual observationswere next groupedfor similarity, using the "storyboard"format advancedby J t,yp"" II p,Plwl'al h·"p"c!flr ~u dj"cipllne; 2) prlorltiZf'; .3) give n,t,lonale

Signat.lIre - Ti t.le

On the FormativeStages of the Adult ScreeningQuestionnaire: A ManagerialApproachfor Screening Adult DevelopmentallyDisabledClients SharonLefkofsky, MS, OTR TamaraE. Avi-Itzhak, DSc

SUMMARY. This article describesthe formative stagesof a screening tool for developmentallydisabled adults, the Adult Screening Questionnaire(ASQ). ASQ offers occupationaltherapistsa uniform approachfor screeningclients. Employing the ASQ will result with a client profile that leads to improved capability in screeningoutcomes for service delivery: prioritizing caseloads,identifying domainsof needfor comprehensiveevaluation,facilitating clinical decision making, and reporting population needs.to administrators. Thesescreeningoutcomescontributeto determiningthe client evalSharonLefkofsky has worked in developmentaldisabilities for thirty years as an educator,program developer,and clinician. She has been on the innovative edge of program developmentin developmentaldisabilities in Michigan and in New York in both policy and practice issues.She has beenwith New York University as Program Coordinator for the post professionaldegree program with specializationin developmentaldisabilities for the past sevenyears. Previously, shewas on faculty at WayneStateUniversity in Detroit, Michigan. Presently,she is a doctoralcandidateat New York University. TamaraE. Avi-Itzhak is currently Adjunct Associate Professorat New York University, Departmentof Occupational Therapy,and Clinical AssociateProfessorat City University of New York (CUNY), Health Science Center at Brooklyn, New York, teaching research coursesto graduatestudents.Previously,shewas a faculty memberat the University of Haifa, Israel, for the Schoolsof Educationand OccupationalTherapy.She was editor of the Journalfor Studiesin Organizationand EducationalAdministration. She was Director of Center for EducationAdministration at University of Haifa. © 1989 by The Haworth Press,Inc. All rights reserved.

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uation and program intelVention necessaryfor the selVice delivery process. Reportedare rationalefor the development/use of the instrument, previousvalidity studies,modifications, and pilot study testing for reliability. The Clients Profile will enablethe clinicians to establish three priority levels according to clients' needs. In addition, each client's needsare identified on nine domainsof occupationaltherapy programmaticconcern. A summaryof findings for five outcomes for selVice delivery is introduced.Limitations and plans for further modification and study are discussed.

INTRODUCTION

This article describesthe formative stagesof the developmentof the Adult ScreeningQuestionnaire(ASQ). The ASQ makesit possible for occupationaltherapiststo employ a uniform approachfor screeninga new group of adult developmentallydelayed adults. Employing this screeningtool will result in a client profile that leadsthe individual therapistto improved capability in the following screeningoutcomesfor service delivery: (a) prioritize caseloads, (b) identify domain/sof need for occupationaltherapyservice, (c) assist in determining further areas for assessment,(d) facilitate clinical decision making, and (e) report populationneeds to administrators.Thesescreeningoutcomesalongwith client evaluation, programintervention,and programevaluationconstitutethe service delivery process.These screeningoutcomescontribute to determiningthe client evaluationand program intervention necesThe mailing addressfor both authors: New York University, Departmentof OccupationalTherapy,34 StuyvesantSt., New York, NY 10003. The authorswould like to acknowledgethe following people.CharlotteExner, MA, OTR, TowsenUniversity for sharingresults of her researchof the original Adult ScreeningQuestionnaire,and encouragingthe further testing of the tool. Michael Chapman,Director, The KennedyInstitute, Departmentfor Community Services,Baltimore, Maryland for written permissionto modify the ASQ for occupationaltherapistsfor use in both community and institutional settings.Dalia Sachs,PhD, Haifa University and N.Y.U., for computeranalyses.Lise Hershkowitz, MS, OTR, Neal Harvison,OTR, work/studystudentsat N.Y.U., and Tzwe Shin Howe, MS, OTR, and Larry Zachow, MS, OTR, doctoral candidatesat N.Y.U., all employedby OMRDD of New York State,for assistancewith revisions, data collection, and testing.

SharonLefkofskyand Tamara E. Avi-Itzhak

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saryfor the servicedelivery process(Halpernet aI., 1982; Halpern, 1986). Sincedevelopmentallydelayedindividuals presenta complexset of problems and servicesto these individuals are not unlimited, identifying such a tool is essential.Even an experiencedoccupational therapistcan feel overwhelmedwhen confrontedwith the difficulties of prioritizing a caseloadfrom the total existing population. In addition to establishinga priority caseload,the therapist must make a clinical decisionwith regardsto which domain occupational therapy intervention should be focused upon for a given client. The above concerns,plus the need for a uniform approachto screening,led to the searchfor an existing screeningtool that would give focus to the occupationaltherapistin the managementof his/ her caseload.The rationalefor the choiceof the ASQ was basedon convincingvalidity testsperformedby its originators. The ASQ was developedby Charlotte Exner for the Kennedy Institute, Departmentfor Community Services,Baltimore, Maryland. The KennedyInstitute grantedwritten permissionfor the first author to modify the ASQ in 1986. Further elaborationwill follow later in this paper. The article includesa section on backgroundinformation which provides rationale for the development/useof the" instrument.Previous validity studies,modificationsmadeby the authors,and pilot study testing for reliability are reported. Clients Profile, the summary of findings, demonstratesthe ASQ's capacity for improving the five outcomesfor servicedelivery mentionedaboveand will be introduced. Finally, limitations and plans for further modification and study are discussed. BACKGROUND AND NEED

Measurementof Outcome in DevelopmentalDisabilities

In his chapter, Halpern (1986), has offered an analysis of the issuesof measurementin mental retardation and use of uniform terminology along with a decision-makingmodel for the service

110 DevelopmentalDisabilities: A Handbookfor OccupationalTherapists

delivery process.This analysisand the decision-makingmodel reflect shifts which have occurredin the past two decadesfrom emphasis on classification and diagnosisof mentally retardedto the of the servicedelivery process. assessment

Measurementof Outcomein the Context of ServiceDelivery Traditional measurementof persons with mental retardation (hereinafterreferred to as M.R.) were mainly psychometric ones and were driven by the conceptand definition of mentalretardation. Due to the psychometricnature of these measures,they concentrated on incidence, prevalence,and prevention. In addition, the assessments were often not originatedfor the specific needsof personswith M. R. Furthermore,theseassessments were often administeredin isolatedsettingsremovedfrom the environmentwhere the behaviorusually occurs.Suchassessments did not havecharacteristics for testing skill attainmentand community adjustment. Another related issue of measurementis format. The two basic formatswhich appearrepresentativeof contemporaryassessment of personswith retardationare tests and rating scales(Halpern et aI., 1982, p.9-99). While testsrequire somebehavioron the part of the personbeing tested,rating scalesinvolve judgementof a reporter,a third person,who describesthe behaviorof the client being evaluated. Each format has strengthsand weaknesses:the rating scale is criticized as being more susceptibleto errors of judgement. The rating scaleis generallyconsidereda betterestimateof performance over time. Tests permit a limited number of opportunitiesto respondto test items. The advantageis that one has the opportunityto view actual performance.The chosen format for the ASQ is the rating scale.This decisionwas basedon time restraints,client availability, and performancevariances. Thesetraditional measurementpracticesdid not contributeto the servicedelivery processas presentlyperceived.Furthermore,these measurementsposed methodologicalproblems related to their validity and reliability. The most current definition of mental retardationissuedin 1983 by the American Association of Mental Retardation (Grossman, 1983) essentiallyhas three componentswhich contributeto the ser-

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vice delivery process.These are intelligence, developmentalperiod, and adaptivebehavior. Intelligence servesonly for the purposeof documentingan impairmentwhereasraisingthe intelligence is not consideredas a goal of the habilitation process(Halpern, 1986, p.30). Developmentalperiod is generallyinterpretedto mean the initial diagnosiswhich occurred before the age of eighteen. Adaptive behavior,replacingthe traditional term of social competence,servesas an indicator for the repertoireof social skills. This term was changedbecauseof the ambiguityof the conceptof social competence. Essentially,peoplewith mental retardationare viewed as having a limited repertoire of social skills and limited insight into the causesand consequences of their behavior.This conceptis inherent in all definitions of mental retardation(Halpern, 1986, 1982). Adaptive behavioris frequently included in the goalsof habilitation as an attemptto reducedisability (i.e., improving skills), or as an attemptto reducethe handicap(i.e., providing opportunitiesto enjoy sociallyvaluedroles) (Brolin, 1983; Halpern, 1986; Wolfsenberger, 1972). Adaptive behavior is an integral componentof the definition of mental retardationand an appropriatetarget for outcome assessment. The servicedelivery processsuggestedby Halp~rn (1982), correspondswith the currentperceptionof the servicedelivery processin that the processassessesability to perform functional tasks in a variety of environments.In essence,Halpern'smodel includesfour stagesof decision making: needs assessment,program planning, programimplementationand monitoring, and programevaluation. A strengthof the model is the proposedlinkage, throughassessment information, of decisionsmadeduring eachstep of the servicedelivery process.When such linkage occurs, it provides support for the accountabilityrequirementsof continuedservicedelivery. It is of interestto note that this servicedelivery processis parallel to the occupationaltherapy process(Hopkins and Tiffany, 1983; Day, 1973). ASQ is a needsassessment activity which is part of the first componentof Halpern's(1982) model in the sensethat it leadsto decisions which affect both eligibility determinationand settingof service priorities. Eligibility in the context of the ASQ refers to the priority settinggoal statedearlier. In other words, eligibility deter-

112 DevelopmentalDisabilities: A Handbookfor OccupationalTherapists

minesthoseneedingoccupationaltherapyservicesratherthan eligibility in the broadersenseof generalizedservice delivery. We regard the function of the ASQ as similar in natureand parallel to the ParachekGeriatric Rating Scale(Parachekand King, 1976; Fidler, 1984),which servesto determineeligibility for psychiatricand geriatric clients. Eligibility is the function of interfacebetweenindividual needsand environmentalopportunities(Halpern, 1982; Fidler, 1984, pp.45-50). Fidler (1984) stressesthe importanceof early needsassessment of patientsadmittedto formulate a treatmentplan and to set priorities. Under her model, needsassessmentactivity includesgoal determinationfor eachdiscipline aswell as identification of client needs.This combinationof activity addressesthe importanceof the interfacebetweenindividual needsandenvironmental opportunity. Fidler's concept of -needs assessmentand the concreteexampleof the Parachekservedas an impetusto the developmentof the ASQ. Level of Retardation

Two interpretationsfor dealing with the level of retardationare suggestedin the literature. Fuhrer (1986, pp.146-7)suggestsusing descriptionsof generallevels of function that are on a continuum and which include: independent-complete independenceor modified independence;dependent- modified dependenceor complete dependence.Halpern (1982) on the other hand, suggeststhat subtestswithin a given assessment shouldbe identified as appropriate for each level of retardation:mildly, moderately,severely,or severely or profoundly retarded. The ASQ in its current edition subsumesFuhrer and Halpern's interpretationswith respectto levels of retardation.The ASQ's revised edition is comprisedof specific items relevantto both polesof the continuum of the levels of retardation.This modification was made to accommodatethe tool to multiple environments(community residence,day carecenter,or institution), so that occupational therapistscan extend the screeningprocessto include a broader rangein the continuumof the level of mental retardationas well as the continuumof function. Therefore,occupationaltherapistsusing the ASQ can evaluateboth higher and lower levels of retardationas well as evaluatinghigher and lower levels of function. The ASQ is

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capableof depictingall possiblecombinationsof different levels of retardationwith levels of function. Uniform TerminologySystem The FunctionalIndependentMeasure(FIM) developedin 1983, is a uniform national data system for medical rehabilitation. The systemwas developedby recommendationto Congressfor a patient classificationsystem, coding system, and uniform patient assessment instrumentso that rehabilitation"products"could be defined accurately(Hamilton in Fuhrer, 1986, p.138).The resultwas a system that would documentthe outcomesof medical rehabilitation. The AmericanOccupationalTherapyAssociation(AOTA) was a sponsorof the Task Forcefor FIM. This sponsorshipresultedin the developmentof three outcome products.Theseoutcome products were completedin 1985 and are the following: (1) a Uniform System for Reporting OccupationalTherapy Services,(2) a proposed OccupationalTherapyProductOutput ReportingSystem,and (3) a Uniform Occupational Therapy Evaluation Checklist (Bair & Gwin, 1985, pp.5-16).It is the expectationthat eventuallyall practicing occupationaltherapistswill be using the uniform datasystem. The two systemsfor uniform terminology interface becausethe conceptualfoundationis similar in that it characterizesand defines the rehabilitation process.The rehabilitation processservesas the basis for the developmentof the uniform data system. It follows that manycategoriesare also similar. The FIM and Uniform Terminology of AOTA selecteda minimum numberof key activities intendedto be valid (necessaryand sufficient) indicatorsof level of disability or cost of disability. The ASQ includesuniform terminology languageas well as certain categoriesof the Uniform TerminologySystem. OccupationalTherapyContentand the ASQ Use of Reed'smodel of adaptationthrough occupation(Reed, 1984) fits with AAMD's conceptualdefinition of mental retardation, which reflects the uniquenessof occupationaltherapy. Under Reed'smodel, occupationaltherapyis concernedwith the activities or routines of daily living within a given time and spaceand the meaningof those activities in terms of adaptive behavior for that

114 DevelopmentalDisabilities: A Handbookfor OccupationalTherapists

individual. According to Reed(1984), "adaptationthroughoccupation meansthe organizationand managementof occupationalactivities and tasks in a mannerthat meetsthe goal of achieving maximum autonomy or functional independence,actualization or satisfactionand accomplishment"(p.495). Many professionshave similar goals for the client. The key to the uniquenessof occupationaltherapyinterventionis through occupation.Under the occupationaltherapy model, occupation related activities are used to help people develop, restoreor maintain a normal routine of occupationalactivities in self maintenance, productivity and leisure. Furthermore,by· occupationReed meansthoseactivities and taskswhich a personperformsas part of the daily living routine. Thesetasksshould engagethe individual's resources,time and energy(p.495). Using Reed'smodel and two taxonomiesof occupationand performance (p.494-6) helps to explain the conceptualizationand delineation of the categoriesand the items chosenfor inclusion in the Adult ScreeningQuestionnaire. Summary

The foregoing analysis provides the rationale for the development of a screeningtool using outcome measuresas a meansof clinical decisionmaking for servicedelivery by occupationaltherapists. A functional assessmentis a profile of strengthsand weaknessesalong one or more dimensionsof behaviorrelevantto a variety of environmentalsettings.Ultimately, the goal of a functional assessmentis to identify problemswhich need professionalintervention to help developmentallydelayedclients reach higher levels of socially acceptablebehavior,or adaptivebehavior. After weighing the methodologicaladvantagesand disadvantages of the rating scaleformat, the authorsdecidedto retain this format. This decisionwas basedon the resultsof analysisof the pilot study and discussionconductedwith individual therapistsinvolved with the pilot. In addition, the use of uniform terminology in the ASQ results in a uniform data systemthat can be applied to assessment. The content model for occupationaltherapy presentsa compatible conceptualizationwith contemporaryassessment methodologyand managementof serviceprovision.

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THE INSTRUMENT AND INSTRUMENTATION

ASQ is a prescreeningtool designedto assistoccupationaltherapists in identifying adolescentsand adults with developmentaldisabilities who are in need of comprehensiveoccupationaltherapy evaluations.The tool is comprisedof individual items designedto addressnine contentdomainsof occupationaltherapy: 1-4: ADL Skills(oral-motor/eating, dressing, hygiene, and homemaking) 5: Community and ADL 6: Job Tasks,Leisure Activities and ADL 7: Motor Aspects 8: Sensory,Perceptual,Cognitive Aspects 9: Social, Emotional Aspects . Developmentand Previous Research

The ASQ was originally developedby The Kennedy Institute,* Baltimore, Maryland, in responseto inappropriatereferralsthat had been made for occupationaltherapy and physical therapy services for developmentallydisabled adults in community residences(Interview, Exner 1986,7).The KennedyInstitutegef!eratedthe developmentof the ASQ, and a clinical researcherinterviewedadministrators, adult care staff, and clients to survey their perceptionsand understandingof occupationaland physical therapy services.The outcomeof The KennedyInstitute'sstudy resultedin Adult Screening Questionnairesin OccupationalTherapyand PhysicalTherapy as well as in Communications,Nutrition, and WheelchairPositioning and Use. The results of studiestesting face and sampling validity of the ASQ showedthat the tool was free of jargon and that the content was appropriateand adequate.Theseresultswere derivedfrom pro*The Adult ScreeningQuestionnairewas developedby Charlotte Exner for The Kennedy Institute, Departmentfor Community Services,Baltimore, Maryland. The KennedyInstitute, grantedwritten permissionfor the author to modify the Adult ScreeningQuestionnairein 1986. The choice to use and modify an existing tool rather than createa new one, was madeon advice from consultants. Additional validation studiesby Kennedy Institute on the Adult ScreeningTool had alreadybeen done and were consideredimportant.

116 DevelopmentalDisabilities: A Handbookfor OccupationalTherapists

ceduresinvolving occupationaltherapistsinterviewing supervisors ofland direct care staff in the first stage. In the secondstage,an occupationaltherapistexternalto KennedyInstitute reviewedcompleted interviews to determinethe needfor comprehensiveevaluation. Resultsindicate a 93% agreementof need of comprehensive evaluationbetweenoutsidereviewersand inside staff. Furthermore,additionalresultsindicate the existenceof a match betweenindividual items within the domainsunder assessment as well as items within eachof thosedomains. Administration and Instrumentation

To administerthe questionnaire,an interview is conductedby the occupationaltherapistwith a third party (eithera direct carestaff or a supervisorof a programfor a developmentallydisabledindividual). Following a debriefing period, the purposeof the questionnaire is statedand the instructionsfor answeringthe questionsare reviewed.During the 15-20 minute (approximate)time period, responsesare recordedby placing a checkmarkin one of the following three ranked columns titled, "yes"(l), "sometimes"(2),or "no"(3). The instruction sheetdirects the intervieweeto answer "yes" if: (a) the answeris yesor true, or (b) the personconsistently completesthe skill without physical or verbal assistancefrom others, and (c) the person consistentlycompletesthe skill within a reasonableamount of time. The answerto the questionshould be "sometimes"if (a) the personis inconsistentdoing the skill independently,or (b) occasionallydemonstrates the ability, or (c) occasionally needsadditional time. The answerto the questionshould be "no" if, (a) the answeris no or false, or (b) the personis unable to completethe skill, or (c) the person never completesthe skill without additional physical or verbal assistancefrom others, or (d) the personis unableto completethe skill in a reasonableamount of time. The scoring is done by the occupationaltherapist. Each client receivesnine summedscoreson items comprisingeachof the above listed domains.Thesescoresserveas individual indicatorsof need for occupationaltherapyinterventionin eachof the specificareasof domain.

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The tool offers a quick, systematicanalysisof client needs.The scoring of the questionnaireand its subsectionswill provide the therapistwith the information to design and implement a comprehensivemodel of servicedelivery, which is cost and time effective. ModiticationslField Testing

Revisionsand modificationsto the original tool were performed in order to achievethe following objectives:(1) the questionnaire will be usedin institutional as well as community settings;(2) the interview method will replace a self reporting questionnaire;and (3) the tool will be costeffectiveand parsimonious.The threestages of modification executedreflect the abovementionedobjectives. Thus, the first stagerepresentsthe first field test of the ASQ in that it was administeredin an institution (seeTable 1). Not only was the environmentchangedbut also the administrationmethodology. Clientswere evaluatedby direct observationin conjunctionwith the ASQ; the ASQ was also self administered;and, the ASQ was administered by the interview method. Based on these attempts, resultsindicatedthat the ASQ was a viable tool in the institutional setting as well as the community setting. Thesewere encouraging resultsas occupationaltherapistspracticein both settings.Furthermore, the resultsof the first stageindicatedthat the interview was far more suitablein the institutionsunderinvestigation. In the secondstage, items were added to the ASQ to include special needsof lower functioning clients. Theseitems were subjectedto additionaltestsfor languageclarity andvalidity. While the first two stagesrepresentattemptsto accommodatefor environmental and methodologicalaspects,the third stagewas performedin order to achievecost effectiveness.The numberof items was reducedfrom 64 items to 49 items. This was accomplishedby reliability testswhich will be discussedin the next section. As indicatedearlier, thesemodificationsreflect resultsfrom field tests and incorporatedfeedbackfrom clinicians, direct care staff and their supervisors.Some items were not applicableand others were redundant.Thoseitems which were appropriatefor the higher functioning client were left on the ASQ to accommodatea variety of mentally retardedwith different levels of function.

00

..... .....

IX

64

186

TOTAL 62

.2

18

11

9

2

Social/Emotional Aspects ....§.

27

6

5

6

30

9

2

15

18

10

4

12 27

12

33

# of Items

192

15

33

27

6

15

18

30

12

36

Maximum

Second Stase

Sensory/Perceptual/ Cognitive Aspects 10

Motor Aspects

VII

VIII

Job Tasks, ADL, And Leisure Activities

VI

5

6

9

Hygiene

Homemaking

4

11

Dressing

Oral-Motor/ Eating Skills

Maximum

First sta.9.£ # of Items

V Community And other ADL Skills

IV

III

II

I

Domain

49

.2

10

7

2

4

6

6

3

8

147

...2

30

21

6

12

18

18

9

24

Maximum

Third Stase # of Items

TABLE 1. Summary of Modifications of the ASQ: Domain

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The third modification was madeto reducethe items found to be redundantin the first and secondrevisions.In the following section, the specific reliability teststhat were performedin order to achieve the aforementionedobjectiveswill be illustrated. See Table 1 for summaryof the three stages.

RELIABILITY TESTS Interrater Reliability Pilot Test An interrater reliability (function of agreement)test was performed on the first stageof the ASQ on 12 subjects.The test was done according to the formula suggestedby Polit and Hungler (1983, p.391). Resultsof this test appearon Table 2 and indicate that a high degreeof interraterreliability exists, r = .93.

Internal ConsistencyReliability Test This reliability test was performed on the second stage of the revision. The sampleconsistedof interviews of 70 direct care staff reporting on their clients. The clients are adults who are severelyprofoundly mentally retarded and multiply handicapped.The clients live in "apartment-like" units containedwithin a remodeled institutional building consideredto be a transition home from the TABLE 2. Equivalence(Interobserver)Reliability (Function of Agreements):Pilot Test (N = 12) Elements

Formula

r

~

Coeff icient of Agreement

_ _ _ _...:.N'--_ __ N + K

where: N

= Number of

Agreements

K

= Number of

Disagreements

___ ----::0:;.1_ _ _ _ _ _= .93

61 + 4

120 DevelopmentalDisabilities: A Handbookfor OccupationalTherapists

institution to the community. The clients attend a day program in the building in which they live. The direct carestaff are assignedto clients for feeding, dressing,and goal directedprograms. The interview was conductedin a quiet room away from the distractionsof the dayroom,which is the centerof activity. The interviewer, an occupationaltherapist,read the instructionsto the interviewee, proceedingwith the questionnaire,and clarifying when necessary.The interviewslastedapproximately15 minutes,and the scoringwas done by the therapist.Demographicand medicalvariables,including age, type of program,diagnosis,medications,and associatedproblems,were obtainedfrom the ind"ividual client record at anothertime. One of the most widely used methodsfor internal consistency testing, namely, Cronbach'salpha, was employed (Chronbach, 1978). Resultsof the test performedon one of the nine domains (chosenat random)comprisingthe instrument,Sensory/Perception/ CognitionAspects,appearon Table 3. Datashowthat the reliability coefficient (Cronbach'salpha) equaling .68 is regardedas an acceptablelevel of reliability (Nunnally, 1978). In essence,the coefficientobtainedshowsthat theseten items are indeedmeasuringthe samedomain: Sensory/Perceptual/Cognitive Aspects.Furthermore,resultssuggestthat by eliminating items 1, 2, or 3, we may somewhatimprove the value of the coefficient and at the same time achieve a tool with a higher parsimony. Future decisionsabout item configuration will be made following additional testingof the fourth modified versionwhich is in process. Stability Test

The stability test of reliability was performedon the samedata obtainedfor the internal consistencyreliability test. The resultsof this test are presentedon Table 4. Results of the Pearsoncorrelation coefficients performed on items which are obviously related (chosenat random) range from r = .17; p = .05 for "lose liquid from mouth when eating" and "drink from a glass," to r = .75; P = .001 for "lose liquid from mouthwhen eating" and "lose liquid from mouthwhen drinking." The valuesof thesecoefficients,and in fact, all othercoefficients

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enable us to suggestthat the ASQ in its presentrevision exhibits satisfactorylevels of reliability. Theseresultsare encouragingand indicate the relative merits of the tool. Clients' Proflles Table 5 representsfindings pertaining to three of the nine domains (chosenat random)includedin the ASQ. Thesefindings representclients' profiles in that they summarizeneedsin quantifiable measureswhich are not only absolutebut also relative in nature. They are absolute in the sense that the measurerepresentseach individual's needas a client. They are relative in the sensethat the measurerepresentsthe needsof the total group for occupational therapyevaluationin anyoneof the threedomains.Thus, an overall profile would be one which includes the scoresof all the nine domams. To illustrate the processof developinga profile of clients, turn to Table 5, #3, the Motor Aspectsdomain. This table presentsa distribution of scoreson Motor Aspects domain by need for evaluation. There are nine items measuringtheseskills in the ASQ. The minimum score a client can receive in this domain is nine. Thus, clients not needingany further evaluationin this domain would receive a scoreof nine andwill be regardedas third priority for evaluation. The clients most in needof evaluationwill receivea scoreof 27 and will be regardedas most in needof further evaluation. The rangeof the actualscoresin this domainof the sampleunder investigationfor this particular domain (N = 70) was 9-25. Once the actual rangewas established,it was divided into three levels of priority of need.The first priority, thosewho scoredbe~een 15-25 are most in needof evaluation.Data show that there are 29 (42%) such clients. The secondlevel of priority includesthosesomewhat in need. There are 26 (37%) clients in this group. There are 15 (21%) clients in the third priority level who scored9. Thoseclients are not in needof occupationaltherapyevaluation. Clients' profiles will enablethe occupationaltherapistto communicate to the administrationconcretedata about the need for services of the entire group as well as identify groupsof clients in need of evaluationwithin the individual domains. As for the individual

...... ~

Individual Items

Seem afraid of simple movement activities that are within their physical ability (going up/down stairs, climbing on a small ladder, etc.)?

Seem to be unaware of body parts or body size--often bumps into objects or people, falls when attempting to sit down in a

3.

4.

5.

Become upset with normal touch from other people and/or objects?

2.

Seem to ignore one side of the body; and/or seem to 'forget' that one hand exists?

chair, etc.?

Have (or appear to have) a usual problem that affects use of materials and tools?

1.

Sensory/Perceptual/Cognitive

Domain

.68

.68

.72

.70

.70

Alpha i f item deleted

TABLE 3. Internal ConsistencyReliability: (Cronbach'sAlpha) Total Population(N = 70)

......

N

'",

Reliability Coefficient Cronbach'sAlpha

Remember the sequenceof activities to be performed during a typical day and where to go/where to do these activities?

10.

10

Remember how to do tasks or skills after they are presented several times?

9.

N of items

Match and sort objects according to color, shape and/or size?

8.

70

Have a good attention span--stayon task despite normal distractions in the environment?

7.

N

Seem to have difficulty in learning the sequenceof steps involved in completing a task?

6.

.68

.59

.60

.62

.63

.65

124 DevelopmentalDisabilities: A Handbookfor OccupationalTherapists

TABLE 4. Stability Test (obviously related items): PearsonCorrelation, Total Population(N = 70)

Item

1.

2.

Oral Motor Skills 1.

Loose liquid from mouth "hen eating?

2.

Loose liquid from mouth when drinking?

Item

.75'" 3.

4.

5.

Eating Skills 3.

Eat appropriate foods \.ith their fingers?

4.

Eat with a spoon?

.68"

5.

Drink from a glass?

.69"

.45"

1.

2.

ITEM 1.

Loose liquid from mouth

2.

Drink from a glass?

• ,' p

~

., P ,P

~

~

~Ihen

eating? .17'

.001 .01 .05

therapist,theseprofiles promoteefficient programplanningfor resourcesallocationof both manpowerand equipment.Additionally, the profile can assistin determiningthe model(s) for intervention accordingto the clients needsand the natureof the setting. Being able to arrive at a quantifiable measurefor clients' needs providesevidencefor the accountabilityrequirementsof continued servicedelivery whose relevancecannot be stressedenough.This provision goes hand in hand with Christiansen's(1983) warning

--

b:

Motor Aspects

3. 9

10

*N=4& (where knife is offered)

Sensory/ Perceptual/ Cognitive Aspects

2.

11

9-27

9-25

15-25 10-14 29 (42%)

34 (50%)

17-31 22 (47%)

N (%)

Range

11-31

1st Priority

Actual

10-30 10-27 16-27 11-15

11-33

Range

of Items

Oral/Motor/ Eating skill s'

Theoretical

Number

l.

Domain

70)

2& (37%)

28 (40%)

12-1& 21 (47%)

N (%)

2nd Priority

TABLE 5. Need Assessment:Clients Profiles Total Population(N

9 15 (21%)

10 7 (10%)

3 (&%)

11

N (%)

3rd Priority

126 DevelopmentalDisabilities: A Handbookfor OccupationalTherapists

that those professionswhich can demonstrateaccountability by quantifiablemeanswill be the professionswhich will survive. Limitations and Recommendations

Introducing a screeningtool is not an easytask and should be regardedas an ongoingprocess.It shouldbe mentionedthat a characteristicof the early reliability effort was basedon randomselection of domainaswell as itemswithin a domainbecausewe wanted some degreeof assuranceof the ASQ's reliability before comprehensiveefforts of systemstestingwas made. One issue that needsto be addressedis the further reductionof items for improved cost effectiveness.In addition, sometest items were found to be too wordy and ambiguous;indeed, the original authors may have added additional statementsfor clarification. Thesestatementsare superfluousin the newer format. Further reductionsin items and within the items cannotbe achievedwithout further testing and retestingof the ASQ, and, at the presenttime, additional testing is underwayfor both reliability and validity. Another issue that needsto be further addressedis the fact that there is no discriminationbuilt in the ASQ to differentiatebetween not being able to function and not being allowed to function. For example,if a client is not offered a fork or a knife, there is no way to determineif the client hasthe ability to performthis function or is deniedthe opportunityto perform this function. A surprising responseto the screeningprocesswas that of the occupationaltherapistsparticipating in the early revisions. These occupational therapists said they were uncomfortable with the screeningprocess.This response,in part, could be becauseoccupational therapistsare traditionally trained to do in-depth evaluations rather than use a screeningprocess.Secondly,they expresseddiscomfort using a third party for information gathering rather than using their own skills, especiallywhen they perceivea discrepancy in the datagiven by the interviewee.This difficulty was anticipated when administrative options were explored, and a decision was made to use this format over other formats for reasonsmentioned earlier. The strengthof the tool for the occupationaltherapistand for the

Sharon Lefkofskyand Tamara E. Avi-Itzhak

127

personbeing interviewedis that the interview helps in establishing rapport, as demonstratedby the following comment from a field tester. For example,it was reportedthat the interview processwas consideredvaluable by the personbeing interviewed,who stated, "my opinion is valued and someonereally careswhat I think." We regard the Clients' Profile as a major outcomeof the ASQ. We suggestthat the levels of priority for evaluationshould be regardedas flexible ones and should be basedon actual rangesobtainedfor eachindividual domain.The priorities presentedin Table 5 should serve as an empirical example. We recommendthat the individual therapistsnot apply rigid rules for establishingthe three ranges.One should be awareof the fact that the clients in the middle of the rangeare most vulnerablefor being eliminatedfrom further evaluation. Therefore,eachdomainshould be consideredindependently. CONCLUSION

As indicatedearlier the ASQ hasthe potentialand merits to fill in a gap in the servicedelivery process.It is of utmost importanceto be able to incorporateempirical data as a sourcefor comprehensive evaluation.As an efficient screeningtool, the ASQ facilitates appropriateservicedelivery to adultswith mental retardationthereby bringing involvement in community life one step closer (Taylor, 1988). In addition, the ASQ also facilitatesthe clinician in respondingto professionaland administrative needs. This tool quantifies work loadsbasedon the needsof the clients. This in turn leadsto guidelines for implementationof appropriateserviceto thosein need.As specific treatment plans are established,professional manpower needscan be identified for future hiring. The quantifying of work loads is anotheradvantagefor clinicians who need to accountfor their time in the competitivehealthcare system. The main advantagesof ASQ could be summarizedas follows: (a) prioritize caseloads,(b) identify domain/sof need for occupational therapyservice,(c) assistin determiningfurther areasof assessment,(d) facilitate clinical decisionmaking, and (e) report population needsto administrators.

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REFERENCES Bair, J. & Gwin, C. (Eds.). (1985).A productivitysystemsguidefor occupational therapy. Maryland: American OccupationalTherapyAssociation,Inc. Brolin, J. (1983). Life centeredcareereducation(2nd rev. ed.). Virginia: Council for ExceptionalChildren. Christiansen,C. H. (1983). Research:An economicimperativeI editorial]. Occupational TherapyJournal of Research,Vol. 3, No.4, pp. 195-198. Cronbach,L. J.,(1970). Essentialsof psychologicaltesting (3rd ed.). New York: Harper and Row. Day, D. A. (1973). Systemdiagrammingfor teachingtreatmentplanning.American Journal of OccupationalTherapy, Vol. 27, No.5, pp. 239-243. Fidler, G. S. (1984). Design of rehabilitation servicesin psychiatric hospital settings. Maryland: RamscoPublishingCompany. Fuhrer, M. J. (1986). Rehabilitationoutcomes:Analysisand measurement.Baltimore: Paul Brookes. Grossman,H. J. (1983). Classificationin mentalretardation. Washington,D.C.: American Associationon Mental Deficiency. Halpern, A. S. (1986). Outcomeanalysisfor personswith mental retardation.In M. J. Fuhrer(Ed.), Rehabilitationoutcomes(1984). Baltimore: Paul Brookes. Halpern, A., Lehmann,J. P., Irvin, L. K., Heiry, & T. J. (1982). Contemporary assessment for mentally retarded adolescentsand adults. Baltimore: University Park Press. Hopkins, H. L. & Tiffany, E. G. (1983). Occupationaltherapy-aproblem solving process.In H. L. Hopkins and M. D. Smith (Eds.), Willard and Spackman'soccupationaltherapy (6th ed.). Philadelphia:Lippincott Company. Nachmias,D. & Nachmias,C. (1987). Researchmethodsin the social sciences (3rd ed.). New York: St. Martin's Press. Nunnally, J. (1978). Psychometrictheory. New York: McGraw-HilI. Parachek,J. & King, L. 1. (1976). Parachekgeriatric rating scaleand treatment manuals.Arizona: GreenroomPublications. Polit, D. & Hungler, B. (1983). Nursing research: Principles and methods(2nd ed.). Philadelphia:Lippincott. Reed,K. L. (1984). Models of practice in occupationaltherapy. Baltimore: Williams and Wilkins. Taylor, S. J. (1988). Caughtin the continuum:A critical analysisof the principle of the least restrictive environment.Journal Associationof SeverelyHandicapped,Vol. 13, No.1, pp. 41-53. Thorndike, R. L. & Hagen, E. (1977). Measurementand evaluation in psychology and education.New York: J. Wiley and Sons. Wolfensberger,W. (1972). The principle of nonnalization in human services. Toronto: National Institute on Mental Retardation.

Intervention Strategies for Promoting Feeding Skills in Infants with SensoryDeficits JaneCase-Smith,EdD, OTR

SUMMARY. Feedingis multi-sensory,highly stimulating experiencefor infants and young children. Feedinginteractionswith children who have oral sensoryprocessingdeficits may be therapeutic and pleasurableor may be stressfuland disorganizing.Specific oral motor and feeding problems in hyposensitive/hypotonicchildren and hypersensitive/hypertonic children are described.Occupational therapy intervention that emphasizessensorystimulation related to the environment,handling before and during feeding, and the sensory qualities of food is explained.

INTRODUCTION

Occupationaltherapistswork with infants to enhanceand develop oral motor skills in feeding. Often therapyoccursduring the feeding process.The feeding interaction between a mother or a therapistand an infant is a multi-sensoryexperience.This interaction combinestactile, gustatory,auditory, vision, and often vestibular stimulation. For the child with sensoryprocessingdeficits, the multi-sensorystimulation that occurs during feeding can be therapeutically arousingor uncomfortableand stressful.A basic knowledge of the normal oral sensorymechanismsand of oral sensory dysfunction is important to understandthe therapeuticpotentials and hazardsof oral stimulation and feeding. JaneCase-Smithis AssistantProfessorat Virginia CommonwealthUniversity. Her mailing addressis 14771 Conway Drive, Manassas,VA 22111. This manuscript is basedon a presentationat the 1988 AOTA Conference.

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This paperdescribesthe sensorymechanismsin and around the mouth. Oral motor developmenttypical of children with hypo- or hyper-sensitivitiesis described, including an explanation of the feeding problems associatedwith oral sensory dysfunction. The concludingsection discussesintervention strategiesfor infants and young children with oral sensorydeficits. Thesestrategiesuse therapeuticsensorystimulationto enhanceoral motor skills and to promote positive feeding interactions.

ORAL SENSORY MECHANISMS The lips and tongue have an abundanceof sensory receptors. They are probably the most sensitiveareasof the body, with up to 10 times more sensoryreceptorsthan other parts of the body. The lips are prehendersthat perform intricate sequentialmovementsand have more tactile receptorsthan our fingers (Thach, 1973). The tongueis similarly full of tactile receptorsand also has the specialized tastereceptors. The oral sensorysystemdevelopsintrauterine.The fetus first respondsto touch in the perioral area at 7 1/2 fetal weeks. By 11 weeksswallowing movementsoccur when the lips are touched.By 29 weekstouch to the lips causessuckingmovements(Rose,1973). Primitive taste is present in the 30 week old preemie. Full term newborns can differentiate between good nutrient taste and foul taste (Nowlis, 1973). In conclusion, the oral structureshave an abundanceof sensoryreceptorsthat are functional very early in life. The jaw, tongue,and lips are well suppliedwith musclespindles that relay proprioceptiveinformation to motor neuronsand are directly responsiblefor reflexive jaw, tongue,and lip movement.Becausethe'tongueand jaw muscleshave well developedproprioceptive mechanisms,many of the oral movementsoperatethrough the muscle spindle reflex arc rather than through higher level cortical control (Kawamura& Morimotor, 1973). During feeding, tongue, lips, and cheeksrespondautomaticallyto the sensoryqualities of food. Oral afferents travel via the facial and glossopharyngeal nervesto the lower brainstemnuclei. Someof theseafferentssynapsedirectly onto the trigeminal and hypoglossalmotor nuclei (Kawamura & Morimotor, 1973). Therefore, oral sensoryinput pro-

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duces a direct, automatic motor responsefrom these brainstem nuclei. The trigeminal nerve carries proprioceptivemessagesfrom the tongue and jaw and relays a return motor signal of reciprocal strength to the tongue and jaw muscles.The trigeminal nerve has other trackswhich reachhigher brain centers,carrying messagesof diffuse touch, pain,temperature,pressure,and proprioceptionfrom the oral area(Chusid, 1976). Tracks of this nerve lead to the thalamus and to the cerebellum.Projectionsfrom the thalamustravel to the parietal lobe. A number of axonal projectionsterminate in the reticular formation where the information is joined by messages from other sensorysystems. The multitude of connectionsfrom the oral area to the reticular activating center explains why oral tactile stimulation is highly arousingand alerting. Farber(1982) and Rood (1962) both emphasize touch to the oral areafor achievinggeneralinhibition or excitation of the nervoussystem.Farber advocatesuse of deep pressure on the lips for total inhibition of body movementand light brushing for alerting and arousal. Both gustatory and olfactory systems have connectionsto the limbic system(Farber, 1982). Therefore,the sensoryinput that occurs during feeding travels to the systemwhich mediatesour emotions. In addition, individuals receiveand expressaffection through touch to the lips, and these tactile receptorsin the lips and oral structuresalso send messagesto the limbic system. The lips are known to be erotic areasand the intensity of general arousal and stimulation of emotionalresponseshould not be underestimated. Touch and taste are only two of the sensorysystemsstimulated during feeding. Visual, auditory, and vestibular systemsmay simultaneouslybe stimulated.Tracks of thesesensorysystemsconverge on the reticular activating system, affecting arousal level (Farber, 1982). The sensoryexperienceof feeding seemsto have multiple effectson the child. Feedingmay createa strongemotional response.Typically, feeding is a wonderful, even erotic sensory experience,and children derive great pleasurefrom the taste and texture of food as well as the other sensory stimuli which often accompanythe feeding experience.Therapistsneed to realize the

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intensity of feeding as a sensoryexperiencewhich should result in pleasureto the child and reciprocallyenjoymentfor the parent. FEEDING PROBLEMS IN CHILDREN WITH SENSORYDEFICITS

Oral sensoryproblemsmay be exemplified by two types of children, those who are hyposensitiveand those who are hypersensitive. Although the oral motor patternsof the two types of children are often similar, individual differencesin oral sensoryfunction should guide the selectionof appropriateinterventionmethods. Children with Hyposensitivity and Hypotonicity

Childrenwho are hyposensitive,and often hypotonic, receivereducedsensoryfeedbackfrom the oral areaand are lessresponsivein generalto touch in and around the mouth. In infancy, such a child may be unsuccessfulat breastfeeding and may lack an adequate rooting and sucking reflex. With hypotonia, the proprioceptive mechanismis diminished and automatic oral responsesare more difficult to elicit. Such a child is at risk nutritionally, as feeding may take longer and may proceedinefficiently. The child may have a lower arousalin generaland may have poor endurancein nutritional sucking. The child may also have reductions in acuity of taste,smell, and touch pressure.Thesemay contribute to indifferencetoward feeding (Morris & Klein, 1987). Often children with low muscle tone, muscleweakness,diminishedsensitivity, and poor endurancehave specificoral motor problems. Mouth closureand lip sealare difficult to achieve.A stimulus on the tonguedoesnot seemadequateto elicit mouth closure.Generally, controlledtonguemotility is decreasedresulting in a passive tongue;however,the tonguemay exhibit wide excursionsof poorly controlled movement.Typically the tonguefalls back in the mouth into passiveretraction. As the infant maturesand is given pureed food, more precise tonguemovementsare needed.The child with low tone, and hyposensitivitydoesnot developpreciseoral movement.With decreased

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tactile discrimination the lips and tongue are not stimulatedto become active. Lateralization of the tongue is delayed, and subsequently the transferof food from side to side of the mouth is inefficient, if not impossible.Often the jaw is unstable,and the child is unable to gradejaw movement.The child usesa primitive munching patternthat is inefficient for masticatinghard, chewy foods. Mature chewing involves midrange, rotary jaw movement and doesnot developwhen the jaw is unstable.Cup drinking is another skill that requiresjaw stability. The hypotonic and hyposensitive child tendsto bite on the cup for stability and may lose liquid during the drinking processdue to poor lip seal and poor mouth closure. As the child is introducedto more texturedfood that is harderto chew, skills do not progressto adequatelymanagethe food in the mouth. In children who are delayed in developingchewing, solid foods may be quite dangerous,as choking can occur. Thus, solid foods that do not dissolve, such as peanuts,raw carrots, or celery should not be offered (Morris, 1982). Hyposensitivity results in a child with primitive oral motor skill, who may demonstrateprimitive but adequatepatterns,which tend to limit the types rather than the amountsof foods consumed.Therapyand skill building tendsto follow the normal developmentalsequence.

Children with Hypersensitivity and Hypertonicity In hypersensitivechildren, oral problems may be more severe. These children may develop hypertonicity causing abnormal oral motor responses.Food intake is more difficult to manageand the child may be nutritionally at risk. This infant is often tactilely defensive and disorganizedin feeding. A simple tactile input may causea bite reflex or a tonic bite. Tonguethrust may be presentas an exaggeratedresponseto tactile or proprioceptiveinput. Abnormal reflexesmay predominatewhen the child is inappropriatelypositioned (e.g., in extension)or when postural alignmentis poor. In a position of extension,the hypersensitivechild usually demonstrates a suckle, characterizedby extension-retractionof the tongue, rather than a suck, which includesan up and down tongue movement.The lip seal is incompleteon the nipple or the cup, and

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the lips may actually retract from the nipple. When abnormal reflexes and hypersensitivity interfere with the sucking, the infant may becomedisorganized.Oral movementsbecomesarrhythmical and suckingand swallowing lack coordination.The feeding process becomesfrustrating and difficult for the infant and caretaker(Morris & Klein, 1987). After sucking becomesa functional skill for the hypersensitive child, the cup and pureedfood may be attempted.The tonic bite or the phasicbite releaseobservedin infancy may re-emerge.Successful cup drinking requiresthat the infant be positionedwith headand trunk stabilized.The first oral motor patternobservedwith the cup or the spoon is one of suckling. Usually the tongue has a bunched up appearanceand does not cup when drawing liquid into the month. A prevalent behavior in the hypertonic child is exaggerated tongue protrusion. The tongue thrust or tongue retraction often interfereswith mouth closure and interrupts the suckling sequence. Active lip movement to draw the food into the mouth is poorly developed.The lips may retract or purse, although this type of increasedmuscle tone is observedmost often in older or severely involved children. The jaw moves in a wide range or a minimal range (as if clenching). In addition, uncoordinatedjaw and tongue movementwhich may interfere with swallowing, and aspiration is possible.Theseuncontrolledbehaviorsare less likely to occur if the oral areais desensitizedprior to feeding attempts.

INTERVENTION WITH A SENSORYINVOLVED CHILD The occupationaltherapist shouldconsiderfour areasof sensory stimulation in feeding intervention for children with sensorydeficits. These are discussedin the following order: (1) the environment; (2) handling prior to feeding; (3) positioning and handling during feeding; and (4) the sensoryqualities of the food. All of theseaspectsof feeding can facilitate or hamperthe child's feeding ability and oral sensorymotor function.

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The Environment

The environmentrefers to the generalnoise level, activity level and visual field provided by the environment. Feeding requires great concentrationin children with sensoryprocessingdelays or deficits. The oral motor skill requiredin feedingis complexand the child is frequently stressed,due to the difficulties and frustrations previously experiencedin feeding. A busy and noisy environment tendsto distractand excite the child at a time when he or she needs concentrationand organization. Feedingis a high stressactivity for both the hyposensitiveand the hypersensitivechild. The hyposensitiveinfant may resistoral feeding becauseit requireswork and providesminimal pleasurablefeedback. The hypersensitivechild, who may want to eat, cannotorganize and control his movementsenoughto do so efficiently. Given the stresslevels of thesechildren, the environmentshould promote calming with low levels of stimulation. Childrenwith disorganizedor impairedfeeding skills are entitled to a cornerof the room or a quiet area.Noisesand generalactivity shouldbe kept to a minimum. Mealtime in classroomsmay be facilitated with music. The best mealtime music is calm and relaxing, with one beat per second. The beat of the music simulates the rhythm of suckingin a normal infant (Morris & Klein, 1987). Good suggestionsfor the mother are to feed in a low light, quiet room using the child's favorite music box or her voice in a soothingmanner. Handling Prior to Feeding

The hyposensitiveand hypotonicchild often needsto be aroused. Although most infants becomemore alert and arousedprior to feeding when hungry, this increasein activity and tone may not occur in the hyposensitivechild. Specific stimuli are used to increasethe muscle tone and arousalstateof the infant. A combinationof vestibular and tactile stimuli can be a very powerful and effective methodof arousal(Farber,1982). However, alerting through rapid bouncing, rolling, and rubbing a child to facilitate an alert and arousedstate prior to feeding may insteadcreatestressand disorganization.

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Handling should begin with simple and nonintrusive sensory stimuli which is increasedgradually accordingto perceivedreadiness in the child. Simply moving an infant with hyposensitivity from a supine position into an upright position may achieve a bright, wide awakestate.While upright, movementthrough space in the vertical plane may stimulate muscle tone. Alerting and increasedmuscletone may be achievedin the child with hypotonicity by gently bouncingwith adequatesupport to ensurethat the child maintainsneutral spinal alignment. When a child is in poor alignment, vestibular input does not effectively improve muscle tone, and may be disorganizingand uncomfortablefor the child. Arrhythmical vestibularstimuli can be very arousingbut can also be disorganizing. Tactile stimulation is appropriatefor both types of children and can be a preparatoryactivity that is arousingand organizing.Touch may be usedto activatespecificoral musclesin childrenwith hypotonia and may decreasemuscle tone in children with hypertonia. The therapeuticvalue of tactile stimulation is increasedwhen the child participatesin applying the stimulus. The goal is that he or she learn to apply the stimulus independently. The oral areais approachedsystematically,first, by giving deep pressureto the chestto facilitate cervical flexion and assistthe child in midline orientation. Next, symmetrical touch pressuremay be provided to the face and mouth with the child's own hand assisting in stroking the cheeksand mandible. Light touch may be appropriate for children with hyposensitivitybut should be avoided in children with hypersensitivity. Firm pressureis preferred, such that gum rubbing providesmore proprioceptivethan tactile input. Gum rubbing may be repeatedon both sides, upper and lower gums, cautiouslycrossingthe midline. The tongue, lips, and cheeksare usually very responsiveto tactile input and an immediate motor responseoften results. Direct sensorymotor interrelationstend to causea reboundeffect betweensensoryinput and motor response. Becausethe cranial nervesare intertwined in the brainstemand musclespindlesare prevalent(Kawamura& Morimotor, 1973) the effect of tactile and proprioceptivestimulation is likely to be immediate and in direct proportion to what is provided. The tactile input should be administeredas a game and should include turn taking,

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frequentverbalization,and attentionto the child's physicaland verbal communication. After rubbing the gums, rubbing the palatemay be appropriateto desensitizeor to enhanceoral awareness.Sustainedfirm pressureto the midline of the palatemay createan effect of generaldesensitization (Wilbarger, personalcommunication,1987). Rubbing the finger wrappedin a towel acrossthe tongue may improve tongue lateralization. Combining taste and touch often heightenssensory awareness,and the additional stimulus of taste with the pressure may have an alerting effect. The therapist'sor caregiver'sfinger may be dipped in pureed food prior to applying deep pressureto gums. Use of a soft tooth brush on the gums may also activateoral structures. Rubber toys are often an acceptablestimulus for the child and can be guided with his or her participationonto sensitive areasof the mouth. During thesesensorypreparationactivities careful attention and responseto the child's cuesare important. Additional activities may be indicated in specific preparationof oral movement.Infants who persistin holding their neck in hyperextensionmay needfacilitation of neck elongation.Lengtheningof neck extensorsand activation of neck flexors are promotedthrough weight bearing and proprioceptive input with the child in a chin tucked position.

Handling During Feeding The next considerationwhenworking to improve feedingskills is positioning and handling during the actual intake of food. Correct postureand trunk alignmentis essentialfor promoting the bestoral motor skill in the child and for ensuringefficient suck and swallow so that food is not aspirated.In generalan upright position is desired, although infants may be positioned in a semi-upright position. Eye contactis ideal, with the child able to view the therapist's or mother'sface without chin jutting or neck hyper-extension. The hypotonic child may collapsewhen brought into the completely upright position and this roundingof the trunk may compromise breathing. However, a reclined position facilitates extension which encouragestongueprotrusionand mouth opening.A balance of flexion and extensionis desiredduring feedingwith emphasison

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chin tuck, neckelongation,and trunk alignment.Neck elongationis facilitated by pressureupward and slightly forward behind the occipital lobe and the chin tuck is facilitated by input to the upper chestat the baseof the neck and to the anterior chin. During feeding, the child shouldbe completelysupportedso that trunk and head are stableand the child has optimal capability to control jaw, lips, and tongue. Oral movement takesgreat concentrationand well established proximal stability. Midline, symmetrical positioning is also important to facilitate symmetricaloral movement. To assistthe child with hypotonia,jaw control may be used to promotestability. Jaw control is firm with consistenttouch pressure underthe baseof the tongue,midway betweenthe throat and the tip of the mandible.While in this position,,the therapistshandresponds to the child's movement,literally as an assistto jaw stability. The goal is to improve mouth closureand more isolatedcontrol of the tongue.In usingjaw control, the therapistallows the child to guide her hand (Morris & Klein, 1987). The hypersensitiveinfant is more likely to need swaddlingor to needreinforcementof flexion and midline positions.Proximal stability should be provided, while allowing extremity movement (Harris, 1986). If the infant predominantlyhas uncontrolled, random movement,containmentof extremitiesmay assistthe child in controlling oral movements.Jaw control can be beneficial for this child also, althoughthe sensitivechild may initially be uncomfortable with the tactile input, and the therapistmust proceedslowly to improve the child's tolerance.With the hypersensitivechild, the therapistmust prioritize which forms of sensoryinput are most beneficial and which seemto causemore actual discomfort than assistancefor the child. Becausechildren do not fall neatly into one categoryor another, no one or two positions and techniqueswork for each child. It is best to use a variety of positions that can be alternatedgiven the fluctuating behavioralstatesand sensitivitiesof the infant. SensoryQualities of Food

The final form of intervention to be consideredis the sensory quality of the child's food. The consistencyand weight of the food determinesthe type of sensoryinput that it gives the child. Thin

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liquids are difficult to control and tend to trickle down both sidesof the tongue.They are particularly difficult for the child with a bunched up or very flat tongueto control. Children with sensoryprocessingdeficits often have inefficient cheekand tongueaction, and chewablefoods that breakapartinto firm and diffuse piecesbecome lost and float into randomdirectionsratherthan coming togetherto form a bolus. Oncethesefoods are brokenapart,it becomesimpossible for the child to gatherthem togetherfor chewing. Softerfoods or pureedfoods easilyform a bolus and can be more efficiently transportedto the back of the mouth for swallowing. Pureedfoods of smooth, thick consistencyare definitely recommendedfor the child with a primitive suck-swallowpattern.However this sensoryinput is very limited and without progressionto more textured,solid foods, chewingskills will not develop. Solid foods provide more sensoryinput than pureedfoods. The heavier,more cohesivebolus providesmore tactile and proprioceptive sensationto the oral musculature.The heavier massof solid food may facilitate a flattening and cupping of the tongue. Due to its physicalproperties,a bolusof solid food movesmore slowly and the child has more time to control it. For the child with inadequate sensoryprocessing,the additional proprioceptiveinput and the increasedtime to integratethat information may allow for more functional feeding. Examplesof "heavierfoods" are mashedpotatoes or oatmeal. The texture of the food effects the type of tongue, lip, and jaw movementsobserved.The hyposensitivechild may exhibit more tongue and lip movementgiven a gritty, grainy, or lumpy food. Grapenutsor grits, for example,can be placedlaterally to improve tonguelateralization.Crisp foods that dissolve,suchas dried breakfast cereal,or gummyfoods, suchas chickenor bananas,are excellent for promoting chewing. Care must be taken in use of these typesof food becausethe child may demonstratea quick suck/swallow, without chewing, if the extra tactile input is too stressfulfor him. The hyposensitivechild may not like crispy, grainy food and may require proceedingslowly from pureedto lumpier pureedto crispy, crunchytextures(Morris & Klein, 1987). The hypersensitivechild will also prefersmoothtexturedfood of one consistency_Soft foods are important for this child and foods with lumps may not be tolerated. Perhapsthe most difficult food

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type is that of a variety of consistenciessuch as vegetablesoup or jello with fruit. The textureand consistencyof foods are selectedaccordingto the infant's developmentallevel and particular sensorymotor problems. Chewy foods require more work. For example,using a piece of licorice may build muscletone and help improve mouth closure when used prior to the meal. Highly textured, gritty foods may elicit more tonguemovementand may help desensitizethe mouth if they can be tolerated.Chewy and gummy foods hold togetherin a bolus for efficient swallow. Examplesare chicken, dried fruit, and soft cheese. Nutritional needsshouldneverbe compromisedto build oral motor skills of the child. Consultationwith a dietician or nutritionist is extremelybeneficialwhen planninga diet or upgradingthe kinds of foods that a child eats.A blenderis helpful for providing a balanced diet of foods that are of appropriateconsistencyfor the child. When liquids need to be thickened,wheat germ and jello should be considered,rather than baby cereal. The nutritional value of the food and its texture and consistency should be carefully consideredin planning a child's diet with his family. Often higher level oral motor skills may be elicited by varying the textureof the child's food. A variety of texturesand tastesis alwaysimportantto promotethe child's toleranceof different foods and to ensurea balanceddiet. The occupationaltherapistand parent should thoughtfully decidewhich foods are bestfor the infant, giving considerationto the nutritional needsof the infant, the food's consistencyand texture, and the infant's and family's food preferences. CONCLUSION

Infants with oral sensorydeficits typically demonstrateprimitive and deficient feeding skills and presenta challengingproblem to occupationaltherapists.Intervention should be carefully planned with the family, giving consideration to the environmentduring feeding and to the taste,texture, consistency,and nutritional value of the food offered. Strategiesfor improving oral motor skills include sensorystimulationto preparethe child for feeding and han-

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dling and positioning during feeding. IntelVention that effectively enhancesoral motor patternsand promotespositive and sensitive feeding interactionsincludesthe parents'input and is guided by the infant's responses. REFERENCES Chusid, J. (1976). Correlative neuroanatomyand functional neurology. Los Altos, CA: LANGE Medical. Farber, S. (1982). Neurorehabilitation: A multisensoryapproach. Philadelphia: SaundersCo. Harris, M. (1986). Oral-motor managementof the high-risk neonate.Physical and OccupationalTherapyin Pediatrics, 6, (3/4), 231-254. Kawamura,Y., & Morimoto, T. (1973). Neurophysiologicalmechanismsrelated to reflex control of tonguemovement.In J. Bosma,(Ed.), Oral sensationand perception: Developmentin the fetus and infant. (pp. 206-217). Bethesda, MD: U.S. Dept. of Health, Education and Welfare, National Institutes of Health. Morris, S. (1978). Selectionof food and equipmentfor effective feeding therapy. In J. Wilson (Ed.), Oral-motor function and dysfunctionin children. Chapel Hill, NC: Division of PhysicalTherapy,University of North Carolina, Chapel Hill. Morris, S., & Klein, M. (1987). Pre-feedingskills. Tucson, AZ: Therapy Skill Builders. Nowlis, G. (1973). Tasteelicited tongue movementsin human newborn infants: An approachto palatability. In J. Bosma, (Ed.), Oral sensationand perception: Developmentin the fetus and infant. (pp. 292-302).Bethesda,MD: U.S. Dept. of Health, Education,and Welfare, National Institutesof Health. Rood, M. (1962). The use of sensoryreceptorsto activate, facilitate and inhibit motor response,automaticand somaticin developmentalsequence.In e. Sattely (Ed.) Approachesto the treatmentofpatientswith neuromusculardysfunction. Dubuque:W.e. Brown. Rose, S. (1973). The consciousbrain. New York: A.A. Knopf Co. Tach, B. (1973). Morphologic zonesof the human fetal lip. In J. Bosma,(Ed.), Oral sensationand perception:Developmentin the fetus and infant. (pp. 96117). Bethesda,MD: U.S. Dept. of Health, Education,and Welfare, National Institutesof Health.

Clinical Management of Dysphagia in the Developmentally Disabled Adult MargaretStratton, MS,

OTR/L

SUMMARY. As a memberof a dysphagiateam, the occupational therapistcontributesa major part in both the assessmentand treatment of swallowing disorders.Dysphagiareferralsfor developmentally disabledadultsmay rangefrom aspirationand choking to ruminatIon and refusal to eat. Using observationsduring mealtime, the therapistestablishesa baselinefor treatmentplanning. Relatedvariablesprovide the focus and parametersof treatment.Although medical evaluationssuchas videoflouroscopymay provide expandedinformation, they are generally not critical tn implementing an effective program. The primary treatmentobjective, in most cases,is to developactive participation of the individual in the eating process.Most of these adults have never experienced"normal" mature eating patterns and may never achieve this level through treatment. The achievementof a functional level of eating will not only assist in maintainingthe person'smedical and nutritional status,but will facilitate a more positive mealtimeexperience.

The occupationaltherapistworking in adult developmentaldisabilities is frequently challengedby referralsfor the managementof dysphagia(eating/swallowingdysfunction).Through direct clinical evaluation, the identification of specific oral-motor skills, related structural limitations, and environmental variables will assist in more accurately defining the problems. Based on the assessment Margaret Stratton is the chief occupationaltherapistat J. N. Adam Developmental Disabilities ServicesOffice in Perrysburg,NY. The author wishes to acknowledgethe administration,occupationaltherapy staff, speechpathologycoordinator,and othersat J. N. Adam for their roles in the developmentand growth of the dysphagiaprogram.

© 1989 by The Haworth Press,Inc. All rights reserved.

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information, treatmentstrategiesare plannedto developactive participation of the client in mealtime.Since eating is a dynamic processaffected by many variables,communicationwith other team membersand continuedobservationof and responseto changesare essential. ASSESSMENT

A comprehensive clinicalassessment provides the direction for the designand implementationof an individualizeddysphagiamanagementprogram.Baselineinformation on eatingskills and behavior helps to establishtreatmentobjectivesand criteria upon which progresscan be measured.Environmentalvariablesat mealtime,as well as non-mealtimeinformation, assistthe therapistin ensuring that the goals are realistic and obtainable. MealtimeAssessment

The most significant aspectof the clinical dysphagiaassessment is mealtime observation.If there are differencesin mealtime settings (i.e., residential versus program), both sites should be included. The therapist'spresenceis often distractingand should be plannedto causethe lest amountof disruption.By involving staff or family membersin the evaluation,valuableinformation that is not apparentin the observationcan be obtained (i.e., consistencyof observedpatternsand variablessuch as food preferences.)The basic componentsof a mealtimeassessment include oral-motorfunction, position, muscle tone, primitive reflexes, type and presentation of food, utensils,and environment.

• Oral-Motor Function: Oral-motorfunction representsthe oral or preparatorystageof swallowing. Since it is the only stage which is voluntary and directly observableand as it can influencesubsequentstages,it is the primary focus in clinical management.The documentationof specificoral-motorpatternsis completedusing the Evaluation of Oral Function in Feeding (Stratton,1981). Basedon the scaleof 0 "passive"to 5 "normal," eachcomponentof eatingbehavioris definedestablishing a profile of strengthsand needs.The individual's response

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is assesseddifferentiating spoon foods, liquids, and finger foods as appropriateto his existing diet. Function observed towardsthe midpoint of the meal is often most representative as a baselinesincemanyindividualshavedifficulty in the initiation of oral-motorfunction and may also demonstratefatigue towardsthe end of the meal. Any variationsin patternsshould be noted. • Position: The individual'smealtimeposition is documentedin relation to the "normal" model sincesubtle position changes often significantly affect treatment.Headand neck alignment, angle of headand trunk recline, and supportfor the upperand lower extremitiesare most essential. • Muscle Tone: Any atypical muscletone or fluctuation in tone is noted in relationsto the observedeating patterns.It is important to differentiatetone and its effects from habitual patternssuchas gravity-dependent"bird feeding." For example, headextensioncausedby extensorhypertonicityis often associatedwith jaw thrust or tonguethrust. Reductionin the tone will often reduce the related oral motor pattern. A habitual head extension pattern is not minimized through position changesand may have limited effect on eating. • Primitive ReflexPatterns: Reflexesincluding the asymmetric and symmetrictonic neck, tonic labyrinthine, and associated reactionsaffect the individual's muscletone and position. As with tone, thesepatternsmustbe identified to enablethe therapist to relate them to eatingpatternsand modify them through position changes. • Presentationof Food/Liquid: Whetherthe personfeeds himself or is dependenton others, factors such as placementof food in the oral cavity, rate of eating, and time required to finish a meal shouldbe documented. • Utensils: The size of the utensil often affects food loss based on the amountof food which is most successfullymanipulated in the oral cavity. The type of utensil (Le., regularglassversus spouted cup) frequently changesthe oral-motor response. Thesevariablesare notedin both initial and subsequentassessmentsto monitor their effect on eating. • Food: Varied texturesand consistenciesof food often contrib-

146 DevelopmentalDisabilities: A Handbookfor OccupationalTherapists

ute to differencesin oral-motorfunction. Individual food preferencesof taste,texture, and temperatureshould be noted as they are indicated through coughing, gagging,control of the bolus, and refusal to eat/drink. • Environment: Auditory and visual stimuli within the dining room are reinforcing to some individuals while distractingto others. The person'slocation in the room, responseto surroundings,and level of interactionare noted in relation to successat mealtime. Non-MealtimeAssessment

In addition to the completionof the mealtimeassessment, occupational therapistsalso considerother factors such as oral structures, medical information, and a clinical history. They provide information on the limitations or rationaleof a treatmentplan which may not be apparentin the direct assessment of eating skills.

• Oral Structures: In conjunction with a speechpathologist, when available,an assessment of oral structuresmay assistin defining a causeof eatingdifficulties. It also enablesthe therapist to recognizestructurallimitations in settinggoals(i.e., lip closure limited by the structure/alignmentof mandible, maxilla, and teeth). Includedin a clinical evaluationof oral structuresare: facial tone; symmetryof head, neck, and face; presenceand alignment of teeth; the statusof the hard and soft palate; the size and mobility of the tongue;noseversusmouth breathing;and generallevel of oral sensitivity. • Medical Information: From the client's record,information on allergies, oral-facial surgery and scarring, gastro-intestinal disorders,and respiratorycomplicationsis obtained.Medications may also relate to an eating difficulty including side effects of increasedor decreasedsaliva, level of gag reflex, and tardive dyskinesia. • Clinical History: When available,early history of the client's developmentand institutionalizationmay provide insightsinto habitual patterns.

Margaret Stratton

147

The combinationof mealtimeand non-mealtimeinformation provides the occupationaltherapistwith sufficient clinical data to develop a baselineof skills. It is also adequate,in most cases,to enable the therapist, in conjunction with other team members,to initiate an effective plan of treatment.

TREATMENT Using assessment information, a profile of oral-motorfunction is developedas a baseline upon which changescan be monitored. Specific deficits are prioritized and addressedbasedon normal developmental sequences.Since many developmentally disabled adults are unableto generalizelearnedskills into new situations,an emphasison direct mealtime interventions has been found to be most effective. Mealtime treatmentapproachesinclude positioning, presentation of the food, utensils, and changesin diet. The primary objective is to developan active participationin eating, or an increasein functional jaw, lip, and tonguemovement.

• Positioning: The basisfor any eating/swallowingprogramis a

seatingsystemwhich provides stability and alignment and is basedon a "normal" model (Figure 1). Using assessment information of tone, reflexes, and currentposition, the therapist must bring the client in this position while minimizing the influence of abnormalmuscletone and primitive reflexes.Fixed orthopedic deformities may also prevent the client from achieving the optimal mealtime position. As the therapist works with other team membersto reposition a client, other variablessuch as comfort and respiratoryrate must be monitored. The final position must be effective not only for eating but for other aspectsof the client's life as well. The closer the client's position is to this upright, slightly flexed postureof the head,neck, and trunk, the more potential there is to develop active oral-motor function. This forward headand neck position relatesto the control of the bolus in the oral cavity during the initial stageof swallowing. As the client is reclined, the act of swallowing becomesincreasinglygrav-

148 DevelopmentalDisabilities: A Handbook/orOccupationalTherapists

ity-dependent.The bolus, particularly thin foods or liquids, movesrapidly towardsthe pharynx without any time for oral sensationor manipulation.Individualswho have relied on this systemover time not only increasethe risk of aspiration,but also frequently developpassivejaw, lip, and tonguefunction. The position of the headand neck most directly relatesto a safe, effective swallow. By maintaining the head in an upright, slightly flexed posture,the client not only has optimal control of the bolus during the oral preparatoryphase,but has protection of the airway as well. Although extensionof the head and neck may be used by acute care patientsas a comFIGURE 1. A "Normal" Model of Positioning

Margaret Stratton

Description of Position 1) Head--slightly

flexed wi th chin in IItuckedll position.

Function To provide optimal proteotion of the airway when swallowing.

2) Shoulders--slightly To provide relaxed neck/chestmuscles forward. related to breathing and swallowing. 3) Trunk--leaning

slightly forward.

To provide optimal body alignment for digestion and respiration.

4) UpEer Extremities-- To provide

weight bearing on elbows.

stability of trunk and shoulders in maintaining an upright si tting posture.

5) Hips--flexed more

To provide the proper degree of pelvic tilt upon which to base a seatedposition.

6) Knees--flexed.

To properly position feet.

7) Feet--supportedl

To stabilize overall seated position.

than 90° and positioned at the back of the chair.

weight bearing.

149

150 DevelopmentalDisabilities: A Handbookfor OccupationalTherapists

pensatory technique to facilitate oral transit (Logemann, 1983), this may increasethe risk of aspirationin a developmentally disabledindividual. Personswho are unableto hold their breathshouldavoid this extendedposition due to the risk of unprotectedairway during the swallow. The sameconceptof headand neck position appliesto individuals with a kyphosis.Bringing the head upright in relation to this should/trunkposition also causeshead/neckextension. For theseindividuals, the should position must be addressed initially in order to ensureproper alignment. • Presentation of Food: Based on the information from the mealtimeassessment, changesin the presentationof food may affect eating skills. Except for personswith a bite reflex, the utensil should contact the lips and remain in the oral cavity long enoughto facilitate jaw and lip closure.Jaw control techniques (Mueller, 1972) may be used to physically assistthis response.This techniqueshould only provide guidanceand not restrict the active jaw and tonguemovementnecessaryfor swallowing. Firm, downwardpressureone-third of the way back on the tongue inhibits increasedtone and facilitates mobility. The pressurealso provides additional sensoryinput to those who havebeenevaluatedas having reducedoral sensitivity. The rate of eatingis crucial in the safepresentationof foods and liquids. Adequatetime is neededfollowing eachreflexive swallow to allow all structuresto return to their rest position before the next mouthful is introduced.When food occurssimultaneouslyin the oral and pharyngealstagesit significantly increasesthe risk of choking/aspirationand reducesthe potential for active control. Individuals assessed as having poor oral sensitivity, delayedswallow, and reducedpharyngealperistalsis are most vulnerablein this area. • Utensils: Nosey cut-out glassesare used to ensure maintenanceof a flexed headpositionwhile drinking. For individuals with delayedtongue response,teflon-coatedor nylon spoons aid in providing downward pressureon the surface of the tongue without risk of injury to the tongue tissue. A tongue blade may assist for those personswith a sever bite r~flex

Margaret Stratton

151

since it can be withdrawn from betweenthe teeth without resistance. Use of syringesand spoutedcups should be avoided in the developmentallydisabled since it bypassesthe oral preparatory stage of swallow. In addition, prolonged use of these ~tensils often promotesa passiveoral-motor responseto eatmg. • Diet: Basedon the mealtimeobservationsof the reactionto the taste,temperature,texture, and consistencyof foods, the therapist must work in conjunctionwith the dietitian to make necessarychanges.Subtle differencesin the food directly influence the ability to sense,manipulate,and control the bolus. Some texture is necessaryto facilitate lateral tongue movement and chewing. For those individuals with reduced oral sensitivity and limited tongue mobility, scattering textures (i.e., rice) may be difficult to manage.Increasedthicknessof foods may provide addedsensationand control to thosewith a delayedswallow. The sameconsistencymay increasefatigue in a person who exhibits excessivetongue movementwhen swallowing. Variables in taste may change eating patterns basedon individual preferences.Cold foods may initially increase/facilitatean oral-motorresponsebut may causean inhibition of muscle activity over a prolongedperiod of time.

CONCLUSION In dysphagiaprogramsfor the developmentallydisabled adult, the occupationaltherapistplans an initial treatmentapproachbased of oral-motorfunction as it is influencedby other on an assessment mealtimefactors. Considerationmust be given to areassuch as deviations in oral structure, clinical history, and medical factors which may limit the potential to obtain specific objectives. The treatmentapproachmust continueas a dynamicprocesswith of the person'sresponse ongoing observation/mealtimeassessment to position, diet, direct intervention, and environmentalvariables. The occupational therapist maintains communicationwith other team membersto ensurean individualized, functional, and active approachto dysphagiamanagement.

152 DevelopmentalDisabilities: A Handbookfor OccupationalTherapists

REFERENCES American OccupationalTherapyAssociation (1987). Problemswith Eating: Interventionsfor Children and Adults with DevelopmentalDisabilities. Maryland: AOTA. Churney,L., Cantieri, c., and Pannell,J. (1986). Clinical Evaluationof Dysphagia. Rockville: Aspen SystemsCorp. Cromwell, F. (Ed.). OccupationalTherapyfor Peoplewith Eating Dysfunctions. OccupationalTherapyin Health Care, 3(2). Farber, S. and Huss, J. (1974). SensorimotorEvaluation and TreatmentProceduresfor Allied Health Personnel.Indiana: Indiana University Foundation. Groher, M.E., (Ed.) (1984). Dysphagia:Diagnosisand Management.Massachusetts: Butterworth. Logemann,J. (1983). Evaluation and Treatmentof SwallowingDisorders. California: College Hill Press. Perske,R., Clifton, A., Mclean, B., and Stein, J. (1986). Mealtimesfor Persons with SevereHandicaps. Baltimore: Paul H. Brooks. Mueller, H.A. (1972). Facilitating Feedingand Pre-Speech.In Pearson,P.H., and Williams, C.E. (Eds.), Physical TherapyServicesin DevelopmentalDisabilities. Springfield: CharlesC. Thomas. and ManagementProgram for Roueche,J.R. (1980). Dysphagia:An Assessment the Adult. Minneapolis: Sister Kenny Institute. Stratton, M. (1981). Behavioral AssessmentScale of Oral Function in Feeding. AmericanJournal of OccupationalTherapy,35, 719-722.

Development and Implementation of a Dysphagia Program in a Mental Retardation Residential Facility Carol A. Lust, MEd, OTR/L Diane E. Fleetwood,BS, OTR/L ElizabethL. Motteler, MEd, CCC-SLP

SUMMARY. This paperdescribesthe implementationof a dysphagia program in a residential mental retardation (MR) setting. Five program phasesare presenteddescribingthe staff requirements,inserviceand other proceduresnecessaryto establishthe program,the evaluation procedures,treatment approaches,and documentation Carol A. Lust is Assistant Professor,Departmentof OccupationalTherapy, School of Allied Health Sciences,East Carolina University, Greenville, NC 27858-4353.Carol receiveda master'sdegreein SpecialEducation,specializing in the severely/profoundlyhandicapped,in 1986, and is presentlyresponsiblefor the pediatric sectionof the OccupationalTherapy curriculum at ECU. Diane E. Fleetwoodis Staff OccupationalTherapist,Caswell Center,North Carolina Division of Mental Health and Mental RetardationServices, Kinston, NC 28501. Diane has been involved in the clinical evaluationand treatmentof swallowing disordersin a developmentaldisabilities setting since 1985. Elizabeth L. Motteler, Chief Speech Pathologist, The Pinnacle Care Rehabilitation Center, Wilmington, NC 28401, and Consulting Speech Pathologist Caswell Center, North Carolina Division of Mental Health and Mental RetardationServices,Kinston, NC 28501. Elizabethhas beeninvolved in the clinical evaluationand treatment of swallowing disordersin an acutecare/rehabilitationsettingsince 1985. The authorswish to expresstheir thanks to the staff administrationand residents of the Caswell Center for their support and assistancein developing and implementing this program; to the Departmentof Speech-Language Pathology and Audiology, and the Departmentof Radiologyof Pitt County Memorial Hospital; to June Urback for her help in preparingthe manuscript;and to Dr. Robert Lust for editorial assistancein reviewing the manuscript.

© 1989 by The Haworth Press,Inc. All rights reserved.

153

154 DevelopmentalDisabilities: A Handbookfor OccupationalTherapists patterns. Specific recommendationsdeveloped at Caswell to improve implementationof such a program with a residential,multihandicappedpopulation are discussed,and our initial results with evaluationproceduresand therapeuticinterventionsin 56 residents are presented.In particular, a detailed analysisof 24 clients whose intervention was basedon videofluoroscopicexaminationare also presented.

INTRODUCTION

Dysphagia,or difficulty with swallowing, is currently gaining interest due to its increasingly identified relationship to medical problemsfrequentlyencounteredin the multihandicapped,mentally retarded (MR) resident population. It has been reported that the leading causeof death in the institutionalized, severely retarded populationis asphyxia(Carter& Jancear,1984) and upper respiratory infection, presumablydue to aspirationof food (Carter& Jancear, 1983; McCurley, Mackay, & Scally, 1972). In fact, at Caswell (total resident population 900), 28 of 254 multihandicappedresidents(approximately1 of every 10) havebeenhospitalized with admitting diagnosesdirectly related to feeding deficits (Table 1). Consistentwith the previousreport, seventy-fivepercent of theseadmitting diagnosesinclude aspirationpneumonia. Swallowingimpairmentsmay be presentsecondaryto anatomical Table I.

Admitting Q.!agnosesill £~ ResidentsHospitalized ill 1985 with Problems Related to Feeding Deficits. Aspiration pneumonia Dehydration

21

2

Weight Loss

Note:

Chronic upper respiratory Infection

6

Other

3

Several of the 28 residentswere admitted with multiple diagnoses.

Lust, Fleetwood, and Motteler

155

damagein the oral, pharyngealor esophagealareas.Also, the normal physiology of the oral-pharyngealswallowing processmay be disrupted(Logemann,1987). Neurologicaland neuromusculardiseases,head and neck injuries, local structural lesions, cancer,gastrointestinal disorders, and birth defects may produce dysphagic symptoms. Therapeuticapproachesfor relief of these symptoms have been largely directed towards rehabilitating patientswith acquired dysphagiasecondaryto acute diseaseprocesses(Logeman, 1983). However, in the multihandicappedMR resident,dysphagic symptomsare more often related to inherited rather than acquired abnormalities,and little information is availableabout the diagnostic or therapeuticapproachto dysphagiain this population. Therefore, this article was written to report our experiencein developing and implementinga dysphagiaprogramwith the multihandicapped population of a residential MR facility. Five program phasesare presented;PhaseI: identify and train the swallowing team; PhaseII: form developmentand staff in-service training; PhaseIII: bedside evaluationand observation;PhaseIV: videofluoroscopicexamination (VFSE); and PhaseV: therapeuticimplementation.Modifications to evaluation, therapy, and assessmentproceduresnecessitated by the specialcharacteristicsof this population are described, as are our initial resultswith 56 residentsin the Caswellswallowing program.

PHASEI: IDENTIFYAND TRAIN THE SWALLOWINGTEAM Implementationof a dysphagiaprogram initially requires additional professionalstaff training to develop the necessarylevels of advancedexpertise.At Caswell Center,the following professionals formed the swallowing team: an occupationaltherapist, a speechlanguagepathologist, a dietitian, a physician, and a nurse. Team membersshouldbe able to provide vital information in the management of a residentwith a swallowing disorderand have an interest in this aspectof therapy. In addition, these team membersshould have at least one year of experiencewith the multihandicapped, mentally retardedpopulation. Possibleroles for eachswallowing team memberare describedas

156 DevelopmentalDisabilities: A Handbookfor OccupationalTherapists

follows. The OccupationalTherapist evaluateseach resident and recommendsor providesany adaptivedining equipment,positioning devices,or oral-motorfacilitation treatmentprogramsthat may be indicated.The SpeechPathologistevaluatesa resident'spresent level of communicativefunctioning and is directly involved in the re-educationof the musclegroupsof the oral cavity and larynx. The dietician evaluateseach resident'snutritional status and fluid intake, assistsin developmentand carrying out special diet recommendations.The attendingphysicianis responsiblefor the primary medicalcareof the residentand coordinatestotal medicaland surgical management.The team nurses,through physicianorders, have direct responsibilityfor monitoring the resident'smedicaland nutritional status, and are directly involved in both oral and non-oral intake (Groher, 1984). One memberof the swallowing team, regardlessof professional backgroundshould be identified as the swallowing therapist.The swallowing therapistshouldobtain advancedtraining in the evaluation and treatmentof swallowingdisorders.Training shouldinclude anatomyand physiology of normal and abnormalswallowing patterns,observationof videofluoroscopicevaluationsand swallowing interventionplanning. The aboveinformation could be acquiredby attendinga three day course,although attendingsuch a workshop would dependupon the supportand financial resourcesof your facility. However,lack of accessto such a concentratedcoursecould significantly delay the training processand, therefore,initiation of the swallowingprogramwould be hindered.At CaswellCenterseveral OccupationalTherapistsand SpeechPathologistshaveattended Logemannworkshops.CaswellCenterpresentlyhas four swallowing teams, Onceeducated,the swallowing therapist(s)shouldvisit other established programs to obtain experience,share knowledge, exchangeideas, and developsupportsystemswithin the surrounding geographicalarea. If multiple swallowing teamsare planned,one swallowing therapistshould be designatedto assumea leadership role in coordinating the developmentof the swallowing program and the teams involved. The swallowing coordinatorservesas a resourceto each team and swallowing therapistfor the entire program. This individual should be present in each evaluation. The

Lust, Fleetwood, and Motteler

157

coordinatorkeepseachteam updatedon currentdysphagiadevelopments and has a working knowledge of swallowing disorders throughoutthe facility. By reviewing all of the dysphagiastudies, the swallowing coordinatordevelopsexpertisein diagnosticsevaluation. Upon completion of these steps, the team should draft formal recommendations and proceduresfor implementingthe swallowing program. It is important that this occur as the final step so that the swallowing coordinatorwill have the necessarybaseof knowledge to support, discussand implementthe program. The program proposal should outline stepsto (1) identify residentswho may be appropriatefor evaluation,(2) refer residentsfor evaluation,(3) evaluate each resident'sdysfunction by the swallowing team, and (4) implementthe recommendedtreatmentprocedures.Within eachof these areas, step by step instructions should be provided, and should define the responsibilitiesof eachswallowing team member in every phaseof the evaluation. The proceduralproposal should then be presentedfor formal institutional, administrativeboard and medical service review for final approval. At Caswell Center the initial phase,from team identification, through training and final approval, took approximately11 to 12 months to complete.

PHASEII: FORM DEVELOPMENT AND STAFFIN-SERVICETRAINING To insure efficient staff communication,two forms were developed: a referral form and a swallowing/dining protocol form (see appendixA & B). Both forms were developedby Caswell'sswallowing therapistsbased upon examplesprovided by other established swallowing programswithin the state. Both forms require administrativeapproval prior to utilization. Obtaining administrative approval greatly improved staff acceptanceand use of these forms when the swallowing program began.In addition, the swallowing/dining protocol form requiredadditional approvalby the institutional forms committee for inclusion in the resident'schart. Detailed aspectsof this form are discussedfurther in PHASE 5 (below).

158 DevelopmentalDisabilities: A Handbookfor OccupationalTherapists

The referral form containsthe resident'sidentifying information, current medical diagnoses,and a description of the swallowing problem(s), a checklist of mealtime behavioral observations,the current diet, and adaptive dining equipment.This provides vital information to the swallowing therapistprior to evaluationof the residentby the swallowing team. As the next step, the swallowing teamshouldprovide in-servicetraining for all staff members.General information about the new dysphagiaprogram, and specific details regardingproceduralaspectsof the programshould be discussed.This includes correct use of the newly developedreferral form. For maximum effect, separatein-services were specifically gearedto eachlevel of staff that were or are to be involved. These levels were loosely defined as administrative, departmenthead, professionaland support staff. To facilitate exposure, in-service programswere often scheduledduring monthly administrative/departmentalmeetings. At each in-service, a swallowing therapist was present,alongwith a secondmemberof the swallowing team. Eachin-serviceparticipantwas given a copy of the administratively approvedprotocol on the swallowing program and a copy of the referral form. It was explainedthat the referral could be initiated by the physicianor the resident'shabilitation team,either at the yearly teammeetingor during an interim meeting.This completedreferral form shouldthenbe forwardedto the swallowingteam.A videotape highlighting both normal and abnormalvideofluoroscopicstudiesis a highly recommendedcomponentof the in-serviceprogram.Each in-servicemeetingusually lastedapproximately30 to 45 minutes, dependingon the level of discussionencountered. The swallowing team(s) should allocate approximatelytwo to three months to develop the necessaryforms, provide in-service programsfor the entire staff, and complete phase II. This time frame obviously will vary accordingto the size of the facility. PHASE III: BEDSIDE EVALUATION AND OBSERVATION

Ideally, each swallowing disorder referral should be evaluated using the bedsideevaluationin conjunctionwith a videofluorosco-

Lust, Fleetwood, and Motteler

159

pic examination(VFSE). ~he specific basis for referral to the dysphagiaprogramis provided in Table 2. We recognizethat the swallowing therapist is not able to assessthe pharyngeal stage of swallowing in a bedsideevaluation.Coughingis not a reliable indicator of aspiration tendencies,and Logemannreports as many as 40% of the swallowingdisordersinvolving an aspirationcomponent may not be detectedwithout VFSE. However, there are practical limitations. Due to the technical, fiscal, and professional constraints inherent to many residential MR facilities, VFSE of each swallowing disorder referral is usually not possible.Therefore,we tend to use the bedsideevaluationto investigatepossiblealternative approachesand as a meansto screenreferralsfor further assessment using VFSE as well. The bedsideevaluationcontainsthe resident'smedical diagnosis, methodof food intake, drug history, respiratorystatus,level of alertness,ability to follow directions, hydration and nutritional status, any dietary restrictions, and an assessmentof anatomicaldefects. Sensory testing of the lips, tongue, palate, pharynx, and larynx as they pertain to speech, mastication, salivation and/or Table 2. Reason for Referral of 50 ResIdents to the Dysphagia Program, from Janaury 1986 to !1EY 1988. Choking

25

Vomiting

5

Weight Loss

4

Coughing

16

Asplrtlon pneumonia

6

Delay or absent swallow

8

Recurrent upper respiratory Infection other Note:

7

Several of the 50 residentswere referred wIth multIple problems.

160 DevelopmentalDisabilities: A Handbookfor OccupationalTherapists

swallowingshouldbe performed.Motor testingof speechand swallowing function should also be included. In addition, the multihandicappednatureof the residentrequires several alterationsto the "standard" bedsideevaluation. Specifically, the past and presentoral facilitation therapy programs,the adaptivedining equipment,and any diet texture changesthat have been attemptedmust be considered.Also, the resident'sfatigue level and any position options that may have been tried must be taken into account.Finally, due to the resident'smental and cognitive level, several aspectsof the "standard" bedside evaluation may not be possible. For example,volitional control is often absent, and this is a necessarycomponentin the assessment of speech and swallowingfunction. In addition,voluntary initiation of tongue movementsis often not possible,and the swallowing therapistmust rely heavily on direct observationsduring an actual meal. In assessingmethodsof food intake, it is extremelybeneficial to requestthat the resident'sprimary caregiver assist in feeding or independentlyfeed the resident.This allows the swallowing therapist to observefirsthand the resident'soptimum functioning level and to establisha baselineof current skills. After the baselinehas been established,the swallowing therapistshould attempt to feed everyresidentand use therapeuticapproachesto improve quality of feeding. Severalapproaches,suchas a changein the resident'shead position, food presentationpatterns,or perhapschangesin diet textures could be attempted.Thesetrial techniquesare very helpful in determiningthe appropriaterecommendations. It is our policy to complete the bedside evaluation within ten working days of referral. Once completed, the swallowing team recommendsone of two approaches.Theseare (1) continuedoral feeding in conjunctionwith a designatedoral-motor program, and (2) further analysisusing VFSE. At our institution, the rate of assignmentto eachof theseapproaches,including severalof the variations in oral feeding approaches,is shown in Table 3. Oncethe swallowing team hascompletedassessment and recommendations,the swallowing therapistwrites a swallowing evaluation report. It is our policy that the written report should be submitted within 10 working daysfollowing completionof the evaluation. The report is then submitted to the resident'sphysician for ap-

Lust, Fleetwood, and Motte/er

161

Table 3. RecommendationsMade for 50 ResidentsFollowing Bedside Evaluation

Note:

VI deofI ouroscopy

24

Diet texture change

11

Oral motor exercises

11

Dining procedures

10

Supervision

11

Adaptive dining equipment

12

Alternative feeding

3

Data collection

3

Other

3

No recommendationsmade. fol low-up In 6 months

2

Several residents received multiple recommendations

proval/disapproval and distributed to the habilitation team. At Caswell Center, the processof referral, evaluation,and initial recommendation(PhaseIII) can require as much as one month to complete.

PHASEIV: VIDEOFLUOROSCOPIC EXAMINATION Our bedsideevaluation procedureshave been successfulin directing 44% (Table 3), of the swallowing disorderreferralsto treatment regimens without the use of additional VFSE. Therapeutic plans are specifically tailored to the individual resident, and a detailed discussionof theseis beyondthe scopeof the presentarticle. Instead, the presentdiscussionwill concentrateon the special requirementsnecessaryto completethe recommendedadditional assessmentsuccessfullyusing VFSE (56%, Table 3).

162 DevelopmentalDisabilities: A Handbookfor OccupationalTherapists

Once the VFSE recommendationis approved,the swallowing therapistschedulesan appointmentat the nearestregional rehabilitation centeror acutecare facility possessinga radiology unit, and forwards a copy of the swallowing evaluation. Lag times of one month may frequentlybe encounteredin schedulingthis exam.Additional constraintson the regional centerare that hospital liability and restrictionson privilegesusually require that the regionalcenter also havea dysphagiaprogram,with a swallowingtherapistthat can assistin the VFSE and its interpretation. Staff necessaryfor the study include the radiologist, the regional rehabilitationcenter'sswallowing therapist,and the residentialMR facility's swallowing therapist.In addition, an occupationaltherapist and the resident'sprimary caregivermay also be needed.The occupationaltherapistmay be neededto assistin proper positioning, and the caregivermay be quite helpful during the actual feeding portion of the study. In general,VFSE refers to the radiographicstudy used to examine the oral preparatory,oral, pharyngeal,and upper esophageal stagesof swallowing. More precisely,dysphagiareferralsare commonly assessedusing a modified barium swallow (MBS). This analysisutilizes a standardamountof liquid barium, barium paste, and a barium coatedcookie to assessthe speedof the swallow, and any motility problemsin the oral cavity, larynx or pharynx. In addition, the etiology and timing of aspiration, if present,can also be identified (Logemann,1983). However,it shouldalso be noted that severalmodificationsto the usual MBS may be requiredto successfully completea VFSE with a multihandicappedindividual. Alterations in positioning, feeding utensils,and mannerof food presentation may all be necessary. Physical deformities, fluctuating muscle tone, and abnormal primitive reflex patternscan createdifficulties with the upright sitting position commonly employed in MBS procedures.We have found that using an infant seat is most helpful in normalizing postural tone and making the residentas comfortableas possible.To maintainthe properheadposition,velcro strappingand pillows may be necessary.That failing, the resident'shead sometimesmust be manuallystabilizedin the therapeuticfeeding position. Different types of adaptive feeding equipmentmay also be re-

Lust, Fleetwood, and Motteler

163

quired to complete a MBS in a mutlihandicappedindividual. A medicine dropper, a syringe, a medicine cup, a cut-out cup, and different sized nipples for infant bottles may be neededto present the liquid barium for ingestion.To successfullypresentthe barium paste,the swallowing therapistshould determinethe correct sized spoon, and determinewhether or not it should be rubber coated. Wheneverpossible,the resident'sown adaptivedining equipment should be usedduring the study. A MBS in an individual that is not multihandicappedinvolves the study of swallows using substancesvarying in size. However, the multihandicappedindividual is never presentedwith food of varying size. Becausethe MR multihandicappedresident usually does not have adequatelip closureor cannotfollow verbal directions,the food portion is always a 1/3 of a teaspoon(Logemann, 1987). Caswell'sspecific recommendationsconcerningfood presentation to the multihandicappedundergoingMBS includesspoonpresentation of the barium pasteto the posteriorsectionof the tongue.Also, mixing the pastewith preferredfood items like chocolatepudding or applesaucemay improve successwith theseprocedures.In addition, the resident'soral motor control may be so poor that the final substance(the barium cookie) portion of the test may have to be omitted. Finally, the resident'scomprehensionlimitations and short attention span may restrict the effort to determine the resident's optimal swallowing ability. The residentmay not comprehendinstructionsthat are neededfor safe oral intake. If the primary caregiver is neededto assistwith the feeding, care must be taken to insure that good radiation safety proceduresare followed. The entire procedure(waiting, registration,positioning, etc.) may require as much as two hours to complete,althoughthe actual radiographic time may be as little as 5-10 minutes. Immediatelyfollowing the MBS, the radiologist and the evaluating swallowing therapist review the videotape. The level of involvement (Cherney,Cantieri & Pannell, 1986) and areasof dysfunction are identified and appropriatetreatmentrecommendations are made (Figure 1). Thesefindings are summarizedin a preliminary report and given to the MR residentialfacility's swallowing therapistthe sameday. The formal report is completedand mailed to the residentialfacility within two weeks.To completethis phase,

164 DevelopmentalDisabilities: A Handbookfor OccupationalTherapists A.

DysphagiaRaUng

I

I

I

MUd

Moderate

(5)

(3)

B.

I

Moderate/Severe (2)

I

Severe (14)

Level of Physiologic Dysfunction

I

I

I

Oral

Delayed Swallowing Reflex

(l5)

(13)

C.

I

Pharyngeal (16)

I

Aspiration (16)

ReconunendedFeedingApproach

I

Oral (10)

I

Oral/non-Oral (2)

I

Non-Oral (12)

FIGURE 1. Summaryof findings from 24 vidcofluoroscopicproceduresreferred from the Caswell Center, including the severity of involvement (Panel A), the physiologicnatureof the underlyingdysfunction(PanelB), and the recommended therapeuticfeedings approach(Panel C). Nl)te that evaluationscommonly cited severalphysiologic disorders.

Lust, Fleetwood,and Motteler

165

from initial VFSE referral, through schedulingand completingthe MBS and formulating the therapeuticrecommendation,may take two weeksto four weeks.

PHASEV: THERAPEUTIC IMPLEMENTATION After appropriateapprovalof the recommendations(oral versus non-oral intake, therapytechniques,or compensatorytechniques), the swallowing therapistshould proceedto implementthe treatment recommendations. The first stepin implementationat CaswellCenter is to documentthe intendedtreatmentplan on the swallowing! dining protocol form and place it in the resident'schart (sample provided in the appendix). The form contains a section for oral motor exercises,thermal stimulation procedures,and dining procedures including current diet textures, adaptive dining equipment, and specific serving procedures.This form is completedby the swallowing therapistand information included is basedupon recommendationsdevelopedby the swallowing team. We have found that in some casesall three sectionsare completed and in other casesonly one sectionis completed.The form is updatedas needed by the swallowing therapist,dependingupon the resident'sstatus. At the presenttime, our swallowing therapistsare unableto provide direct swallowing therapydue to otherjob duties and responsibilities. Thus, the secondstepin implementationis to train the staff from the resident'sunit to properly implement the recommended treatmentand therapyprocedures.This is accomplishedby scheduling intensivein-servicetraining for the staff working with the resident. The staff are given a copy of the swallowing!dining protocol and the swallowing therapistverbally explains all of the information. This is followed by hands-ondemonstrationof the techniques using staff and/or the resident. The swallowing therapist ensures that eachstaff personhas a clear understandingof the information, and can implementtheseprocedureseffectively. Training the staff at this level takesapproximatelyone week. Upon completionof the formal training, successfulimplementation of the swallowing program is insured by following a schedule of graduallydecreasinginvolvementby membersof the swallowing

166 DevelopmentalDisabilities: A Handbookfor OccupationalTherapists

team. During the first two weeksof implementation,the swallowing therapistshould feed the residentonce daily. During the third week the professionalassistant(such as a COTA or LPN) should servethe residentonce daily, and by the fourth week, the primary caregivershould assumecompleteresponsibilityfor implementing the resident'sswallowing program.This scheduleallows the swallowing therapisttime to monitor program effectivenessand make any neededmodifications in the swallowing/dining protocol. Currently, therapyprocedures(oral motor exerciseand thermal stimulation) are implementedsevendaysper week, threetimes daily, for approximately10-15 minutesprior to mealtime.The staff members then proceeddirectly to mealtime dining procedures.This insures that the residentreceivesmaximum benefit from the therapy and that oral-intakeis as safe as possible. Documentationof the swallowing/dining protocol procedures and progressshould follow this schedule:the swallowing therapist should documentobservationof the primary caregiverand resident at a different meal eachday for the first two weeks,progressingto once every two weeks for one month, and if all goes well, to monthly observationsby the swallowing therapist.Formal quarterly reportson the swallowing programshould be written for eachresident. This report should contain generalobservations,consistency of program implementation,caregiver'sinput regarding the resident's performance,the resident'stoleranceto the program, meal intake,weight gain (or loss), any changein the frequencyof coughing/choking episodes,and the resident'stoleranceto current diet texture. Treatmentstrategiesin a multihandicappedMR populationoften challengethe swallowing therapist.Common problemswhich hinder treatmentapproachesare the resident'slow cognitive level, resistanceto oral-facilitation techniques,and the persistenceof abnormal oral-motorskills. Only two of the therapy techniquesusually recommendedfor swallowing disordersare appropriatefor our population. The first are oral-motorexerciseswhich serveto improve the speed,strength and range of lip and tongue movements,permitting better bolus control during the voluntary stage of the swallow. The secondis

Lust, Fleetwood, and Motteler

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thermal stimulation, which is beneficial in heighteningthe awarenessof the swallow (Logemann,1983). . Nonetheless,we have developedmodifications to the conventional approachthat producessuccessfultreatmentinterventionfor the MR resident. For oral-motor exerciseprogramswe have used lollipops, frozen caramelcandy on a stick, or popsiclesto accomplish lip and tongue exercises.These techniqueswork extremely well with lower functioning residentswho cannot imitate or perform volitional oral-motor exercises.The types of food used in these exercisesare also excellent positive reinforcers to the resident. We havefound that flexible fish tank tubing works just aswell as licorice sticks for improving tonguecontrol of the bolus, with the advantageof minimal cost and easyaccessibility. During thermal stimulation therapy, frozen lemon glycerin swabs, and frozen nonbreakabledrink stirrers are used instead of laryngealmirrors. The laryngealmirrors are expensivefor the institution and dangerousto the resident that exhibits pica behaviors (consuminginedible objects).Finally, we have eliminatedpossible judgmenterrors or new staff error by providing each residentwith an infant size spoonto ensurethat eachbite of food is limited to 1/3 teaspoon.As more residentsare evaluatedfor swallowing disorders, and therapyis recommended,swallowingtherapistsmust continue to be creative and innovative in the application of "conventional" treatment modalities to the multihandicapped MR population. CONCLUSION We have describedour experiencewith the logistics of developing and implementinga dysphagiaprogram in a MR, multihandicappedresidentpopulation.Alternativesto including videofluorosof each patient were copic examination(VFSE) in the assessment videofluoroscopy,the modifidescribed.In thosepatients~equiring cations to standardtechniquesthat were necessaryto successfully complete this procedurewere described. In our experience,fifty percentof the residentsrequiring VFSE to assessdysphagicsymptoms were ultimately recommendedto a non-oral feeding program. In oral feeding programs,oral-motorexercisesand thermalstimula-

168 DevelopmentalDisabilities: A Handbookfor OccupationalTherapists

tion (with severalmodifications)were the most commonly recommendedtherapies.At this stageour results are largely qualitative. However,preliminaryanalysisof the impact of the swallowingprogram in 24 residentsinitially evaluatedusing VFSE is as follows (Figure 2). Six residentshad to be excludedfrom analysisdue to the complicatednatureof their medicalcourseand becausethe relation of the medical problem to a feeding deficit could not be clearly estabInitially Evaluated Ualng VFSE (24)

Medical Course Too Complicated to A.aeas Impact of Swallowing Program (S)

No Weight Change

Weight Loss

Significant Weight Gain

Below OeelredWelght; No

Change (4)

(4)

(5)

(9)

Already at

Intended

Unintended

Oeelred Weight

(2)

(2)

(5)

Showed Improvement by Rating at 2nd VFSE (4)

FIGURE 2. Preliminaryanalysisof the impact of the swallowing program in the 24 residentsinitially evaluated.Using VFSE.

Lust, Fleetwood, and Motteler

169

lished. Of the remaining18, 5 (28%) showedimprovementas indicatedby significant weight gain. Four residentsexhibited a weight loss, but half of thesewere expectedfrom medical ordersto reduce intake. The unintendedweight loss remainsunexplained.Nine residents (50%) showed no weight change,but more than half (5) of thesewere alreadywithin the desiredweight range.Of these5 residents, 80% showed improvement as rated during a follow-up VFSE. Thus, between positive weight gain and improved VFSE rating, 50% (9/18) of the most severelyinvolved residentsdemonstratedimprovementafter enrollment in the swallowing program. We are encouragedto note that even in the most severely involved subset(thoserequiring VFSE to assess),preliminary review indicates that fully one-half have shown improvement following placementin the swallowing program. These results are preliminary, and are focused on the implementationof the program. The ultimate impact of such a programon issuessuch as the numberof choking episodes,feeding time neededby the care giver, or cost effectivenessremainsto be establishedin our institution. On the basisof our demonstratedneed, and early resultsfollowing initiation of a swallowing program,we would recommendthat similar swallowing programsbe consideredin other residentialMR facilities. In implementinga swallowing programdetailsfor quantitative evaluationof programimpact should be establishedfrom the beginning.Swallowing teammembersmust be preparedto be innovative in adaptingprogramsto the particular needsof their resident population. REFERENCES Carter, G., Jancar,J. (1983). Mortality in mentally handicapped:Fifty-year survey at stoke park group hospitals.Journal of Mental DeficiencyResearch,27, 143-156. Carter, G., Jancar,J. (1984). Suddendeathsin mentally handicapped.Psychology Medicine, 14,691-695. Cherney, L. R., Cantieri, C. A., Pannell, J. .r. (1986). Clinical evaluation of dysphagia.Rockville: Aspen. Donner, M. W. (1986). Editorial. Dysphagia,1, 1-2. Groher, M. E. (1984). Dysphagiadiagnosisand management.MA: Butterworth. Logemann,J. A. (1983). Evaluation and treatmentof swallowingdisorders. San Diego: College-Hill Press.

170 DevelopmentalDisabilities: A Handbookfor OccupationalTherapists Logemann,J. A. (1987, October).The role of the speechlanguagepathologistin the managementof dysphagia.Paperpresentedat the Evaluation and Treatment of Dysphagia:A Workshop. Chicago,IL. McCurley, R., Mackay, D. N., Scally, B. G. (1972). Life expectationof mentally subnormalunder community and hospital care. Journal of Mental DeficiencyResearch,16,57-66.

Lust, Fleetwood, and Motteler Append~

171

PJ.

CASWELL CENTER REFERRAL FOR SWALLOWING EVALUATION Oate'__________________ ___ ReferrI ng Source,______._________ _

Name'__________________________ _

FunctI on I ng LeveI , .

Case No.'

_ Date of Onset of Problem'______________

OOB' _ _ _ _ OOA' _ _ _ _ _ _ Unlt/Olv.' _______________ _

Med I caI 0 I agnoses' ._.__.__ Brief description of problem,

----.-----.---.---Current Oiet'_________________________________________________________ __ Adaptive Feeding Equipment'______________________________________________ _ Pleaseanswer' Can the resident fol low simply gestural/verbal commands7 _______________ __ VerbaI Nonverba1_-:-__:-__:-:Any coughing during dinlng7 Any choking during dlnlng7_ _ __ Any recent unexpI a I ned we I ght loss 7_____________ ...,-____________________ _ Is there a history of chronic respiratory problems7___________________ _ Is there a persistentmucus build-up or secretlon? ________~~----~~-__ Are any speclflr. foods or liquids more difficult for the resldent7 (Please IlstJ' __________________________________________ .____________ _ Does the resident self-feed7 I s the resIdent ambuI atory o;::-;:;-;n'::ambuI atory7_--:____-;-:-____:--:-__-:-::-_____ Are there any behavior problems; (If so, please describe and note If a program exists)

Please enter name' Social Worker'_~~~--~------------------------------------------­ Speech-LanguagePathologist, Occupational Theraplst'______ Diet I t Ian'__________ .. OT Advocate' Physician' RN, MRHC 11'__________________________________ __

172 DevelopmentalDisabilities: A Handbookfor OccupationalTherapists

Caswell Center NORTH CAROLl NA DIVISION OF MENTAL HEALTH AND MENTAL RETARDATION SERVICES SWALLOWING/DINING

PROI9~Qh

EVALUATOR: _______________ . DATE: _ _ _ _ _ _ _ _ _ _ _ ___ I.

ORAL-MOTOR EXERCISES:

II.

THERMAL STIMULATION:

III. DINING PROCEDURES: A. DIET-

B.

C.

ADAPTIVE DINING UTENSILS -

PROCEDURES-

Form No. DMH MRP 4-10-7B 07-145-1187

TEAM PROGRAM GOALS & PLAN

Pre-VocationalProgramming in a PediatricSkilled Care Facility JeanneE. Lewin, MS, OTRIL

SUMMARY. This article describesa pre-vocationalprogram that was developedin a private residentialskilled care pediatricfacility, under the gl,lidance of an occupational therapy consultant. This "SpecialTraining Program"was designedto meet the needsof the few higher functioning adolescentsand young adultsresidingwithin the facility who did not participatein daily community school programs. This paperpresentsthe philosophicalissuesrelatedto developing a pre-vocationalprogram;the criteria for selectingprogramparticipants; the program structure(implementationdetails, work sample selection,productionrate datarecords,programsupervision,participant remuneration,physicalset-upand start-upcosts);and an evaluation of the benefits and disadvantagesof the program following one year of the SpecialTraining Program'sinitiation date.

INTRODUCTION

With an increasingnumberof occupationaltherapistsbeing utilized as consultantsto large residentialfacilities servingclientswith developmentaldisabilities,the therapistmust assistthe facility staff in developingstrategiesto meetresidents'needs.Periodicallythose strategiescall for initiating a new programwithin the facility, which may require additional funds and a reorganizationof full-time staff JeanneE. Lewin is currently Clinical Supervisorof Pediatrics,Occupational Therapy Department, Rehabilitation Institute of Chicago, Chicago. She also maintainsa limited private practice. Copies of the ResidentPre-VocationalParticipant Selection Evaluation and other forms relatedto the training programcan be obtainedfor $10.00by writing JeanneE. Lewin, 894 St. Andrews Way, Frankfort, IL 60423.

© 1989 by The Haworth Press,Inc. All rights reserved.

173

174 DevelopmentalDisabilities: A Handbookfor OccupationalTherapists

responsibilitiesand commitments.This article describesa pre-vocational program, "Special Training Program" (STP), that was developedin a pediatricskilled care residentialfacility by the author, referred to in this paper as "the consultant." Steps taken in the developmentof this program may be applied to a variety of day schoolor residentialfacilities. Specific detailsregardingthe participant selection process,developmentand evaluation of the work sampleand work-relatedbehaviorsare provided. The first part of this paperwill highlight the mechanicsand the developmentof the STP. The secondpart will presenta critique of the pre-vocationalprogramfollowing one year of operationin the pediatric skilled care facility. SETTING AND POPULATION

This pre-vocationalprogram was developedby an occupational therapyconsultantin a privately funded, 128 bed, skilled care, pediatric residentialfacility for children from birth to 21 yearsof age. The SpecialTraining Programwas designedto meet the needsof the few higher functioning adolescentand young adult residents. These individuals did not participate in daily community school programsoutsideof the facility. The functional level of a majority of the residentsis in the severeto profound rangeof cognitive and physical abilities. The full time therapy departmentat the facility consistsof four certified occupationaltherapyassistants(COTA's), six TherapyAides, and one Speechand LanguagePathologist. PROGRAMRATIONALE

Background Adulthood is a time when one undertakesa life-task role with an increasedemphasison work responsibilitiesand related behaviors and basic finance and budgetingissues(Hopkins & Smith, 1983). Play becomesrelaxation and recreationduring the adult years and acts as a supportive componentto the worker role (Kielhofner, Burke, & Igi, 1980). For the majority of institutionalized mentally retardedindivid-

JeanneE. Lewin

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uals, the transition from adolescenceto adulthoodis generallynot accompaniedby an increasein personalresponsibilitiesconcomitant with one'schronologicalmaturation.However, throughspecial occupationalguidanceand programmingby health care providers, this populationmay have the opportunityto be nurturedin developing appropriatework behaviorsand physicaland manualskills necessaryfor employmentoutside of the residentialfacility. The STP was designedto provide a milieu in which older adolescentsand young adults in a residential facility could functionally develop such work relatedbehaviorsand skills. Vocational educationis a major segmentof American education. Public Law 94-142, The Educationfor All HandicappedChildren Act of 1975, and Public Law 94-482, the Vocational Education Amendment of 1976, explicitly recognize the special needs of handicappedindividuals. Each law addressesa complimentaryarea of concern as well as providing funding support for facilities to provide service in theseareasof need. Public Law 94-482 specifically referencesThe Educationfor All HandicappedChildren Act, requiresconformity with it and statesthat federal grantsbe provided to statesfor supportof vocationaleducationalprogramsfor individuals with special educationneeds(Weisgerber,Dahl, & Appleby, 1981). Transitional programming by educators from the academic/ school environment to the work place are being emphasizedfor those studentswho are approachingsecondaryschool graduation. In severalstates,somespecialeducatorsserveas vocationaladjustment coordinatorsand have duties similar to those of a vocational counselor(Brolin, 1976). Basedon the assumptionthat occupationaltherapymust be "occupation" (Kielhofner et aI., 1980) and the assertionthat occupational therapy is directed towards enabling humans to fulfil their needfor occupation(Reilly, 1962), a therapeuticprogrammust embody purposefulness,challenge,accomplishmentand satisfaction. It is thereforenatural that the occupationaltherapistwho consultsto a facility serving the mentally retarded/multiplehandicapped will focus the therapy serviceson pre-vocationalassessmentand programming.In the STP, the authoractedas developer,facilitator and partial implementorfor the program.

176 DevelopmentalDisabilities: A Handbookfor OccupationalTherapists

Purpose

The purposeof developingthe STP was twofold. The first and foremost purposewas to exposethe residentsto and give them an opportunity to establishwork-relatedbehaviors.Work-relatedbehaviors are defined here as thosebehaviorsthat are critical for successin a vocationalsetting. Attendanceand punctuality, accuracy and speedof work, neatness,motivation, and reactionto constructive criticism are examplesof work-relatedbehaviors(Scott, Ebbert, & Price, 1986; Stephens,1978; Wehman,Kregel, & Barcus, 1985). The secondpurposeof the STPwas to orient the participantto the world of work while addressingspecificwork deficienciesand maladaptivebehaviorswhich deterthe participantfrom obtainingwork. "Work" is the primal)' treatmentmedia in a work adjustmentprogram. Don Brolin, in his book VocationalPreparationof Retarded Citizens,statesthat work adjustmentskills must be developedin the mentally retardedindividual before formal work evaluationefforts may be conducted(Brolin, 1976, 1982). Upon reviewing the programs of these older residents who rangedin agefrom 15 to 21 years,the consultantlearnedthat much of their occupationaltherapy programmingfell into one of three categories:(1) Activities of Daily Living Skills, primarily dressing skills relatedto fastenings;(2) self-feedingskills; and (3) fine motor tasks which enhancetheir manipulativeabilities. These programs were generallyimplementedon a one-to-onebasisby the Certified OccupationalTherapy Assistant (COTA) on a rather inconsistent schedule.Therealso appearedto be a limited opportunityoutsideof the therapy sessionof theseresidentsto reinforce the skills practiced in therapy. This led to considerationof a more functional as well as motivational programfor residentsto achievethe samegoals and be provided on a consistentschedule;sucha programcould be designedto foster adaptiveskills that would have a significant impact on the future of theseolder individuals outsideof the facility. The guiding questionfor this programwaswhethertheseresidentscurrentlyand probably destinedto remain in the facility for life could be given

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preparationIn skills which might lead to future placementsfor them. Since this particularfacility is a pediatric home, there was some urgencyto develop a meansby which theseolder residentsmight acquireskills that would foster a transitionfrom school to the work environment. PROGRAMOBJECTIVE A long rangeobjective of the STP was for the participant to be acceptedinto a communityshelteredworkshop.A short term objective was for the participant to developwork-relatedbehaviorsand basicskills as a foundation upon which the facility staff can evaluate the potential for vocationalpreparation. PROGRAMMETHODOLOGYAND STRATEGIES Presentinga written proposalto the facility's administratorswas the initial step in the program developmentprocess.The proposal detailedthe participantselectionprocess,the programpurpose,the physical and operational structure and specific examplesof the work sample tasks. The compensationsystem, a token economy, was also described,as well as an intrafacility systemfor ongoing program operations.The occupationaltherapy consultant'srole in the STP was also defined. Participant Selection

The participantsin the initial STP group were to be the five highest scoring individuals amongthe total group testedusing an informal, criterion-referencesassessment (i.e., a test that is constructed to yield measurementsthat are directly related to specific tasks rather than to the performanceof other individuals) (Gronlund, 1981). Thesefive top-performingindividuals would be the model group; once their work-related behaviorswere established,others would be addedto the group. The minimum criteria to be considered for the model group addressedthe most basic competencies one would needto productively participatein a workshopsetting.

178 DevelopmentalDisabilities: A Handbookfor OccupationalTherapists

Basic CompetenciesRequired for Participation Basic competenciesrelated to one's physical, perceptual and cognitive abilities provided the basis on which residentswere selectedto participatein the STP. The physicalability to reach,grasp and transferobjectswasconsideredessentialbecausethe STP activities would involve manipulativetasks. Becauseseveralof the potential candidatesfor the program had varying degreesof visual impairment,visual abilities adequateto allow for grossdiscrimination betweenobjectswas an important considerationin the participant selectionprocess.The capability to follow simple verbal commandssuchas "sit ... wait ... stop ... raiseyour hand," as well as the ability to respond appropriatelyto "yes" and "no" was deemedan importantability for behaviormanagementin the workshopsetting.The last criterion (i.e., the arbitrarily selectedduration of eachwork session)pertainedto the toleranceand physicalability to remain seatedfor 15 minutes at a time betweenbreak periods. This criterion would limit the numberof thoseresidentswho demonstratedfrequent, uncontrolledgrand mal seizuresand thosewho experiencedskin breakdownproblemsfrom qualifying for the STP by crediting them with lower points in this final category.

Participant SelectionEvaluation All candidatesfor the STP were to be assessedby the Resident Pre-Vocational ProgramSelectionEvaluationprior to being placed in the program. The participantswere then selectedbasedon the performancescores. Each of the four exercisesof the ResidentPre-VocationalProgram SelectionEvaluationcorrelatedwith the minimum criteria describedin the previoussection.ExerciseI focusedprimarily on the manipulativeabilities, although one's ability to follow simple and complex directions and to apply simple perceptualconceptswas also evaluated.For example,eachcandidatewas instructedto pick up a block with one hand, transfer it to the oppositehand and replacethe object on the table. Instructionswere repeatedwith index cardsand pencilsreplacingthe block; the variety of objectsgrasped provided information on one's adaptive ability to handle various shapedobjects.

JeanneE. Lewin

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Exercise II assessedfunctional eye-handskills related to gross visual acuity. Specifically, it testedone'sability to accuratelyreach for and grasp varying sized objects. Exercise III, Receptive Language, related to one's ability to respondto one word commands (e.g., stop, faster, slower, wait, stand up) that would be used for basic behavior managementin this program. Exercise IV, the last section, addressedone's physical ability to sit for 15 minutes by noting whether the individual could sit for 15 minutes in the absenceof seizuresor the threat of skin breakdown.

Scoring A simple scoring systemwas usedwhich required a minimum of staff time to score and interpret the results. Items were scoredon a zero to two point scale; a stopwatchwas used to record the time required by candidatesto completeeach item.

Staff Two staff persons,the educatorand speechpathologist,were to administerthe ResidentPre-VocationalParticipantSelectionEvaluation and implementthe STP. Thesefull time staff were trained by the consultantto conductthe evaluationsince they worked directly with those residentsand would have some input regardingthe ultimate selectionof the first group of participants.

Training Program The prospectiveresidentsin this new programhad Individual Educational Plans (IEPs) or Individual Habilitation Plans (IHPs) involving motor programs, social habilitation and language programs. Developingwork sampleswhich would correlatewith each of the IEPs and IHPs long rangegoalswas the next areaof concern.

Work Samples Work Samplesare simulated tasks or work activities for which there exists no industrial, businessor other counterpart.Work samples are contrastedwithjob samples,which are modelsor reproduc-

gg

......

Cannot do (physically or cognitively incapable)

Requires physical assistanceand/or verbal prompting to complete

Can do independently

Task Performance

A.

FIGURE 1. Scoresystemused to determineSTP participantselection.

--------------------------------

Score:_ __ Time: Comme-n"-ts-:--

Instruct student to pick up one (1) cube with one hand, transfer to opposite hand and place cube on table. Repeat instructions for all 10 cubes.

Exercise I

Table & Chair (in a non-distracting room) Stop Watch 10 - 1" cubes (2 each of red, green,yellow, blue and white) 10 - 3" X 5" Index cards 10 - pencils

Materials Needed

o

2

Poi nts

Accuracy Score Criteria

Manipulative Ability

JeanneE. Lewin

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tions of a job that exist in an industrial, businessor other setting. The STP only utilized work samples(Brolin, 1976). The Stamping Activity in Figure 2 demonstrateshow a work samplemay incorporateprogressiveskill levels of performance. Daily Operation

The STP was to be held in the sameroom daily, initially for one hour. This requiredthe facility to provide a designatedwork space in which to housethe program.The long rangeplan was to increase the scheduledtime to one full morning severaldaysper week. Each residentwould be assignedto a work stationto which he/shewould be expectedto return daily and after breaks.The plan also required that the facility provide a table or sometype of work surface. A punchcard systemusingenvelopeswith the resident'snameon eachenvelopewould be stationedoutside the workshopdoor. This systemwas designedto representtime cards to documentattendanceand punctuality. Prior to enteringthe work area,the staff person would punch the date and time that the resident entered.A clock, or a kitchen timer, was neededin the working areato designate breaksand work periods. The program had work and rest (break) periods at regularly scheduledintervals. A clock in the work areawould have red and green dots on designatednumbersto indicate "break" times and times when to return to work. The alarm clock or kitchen timer would alert the clients to the time intervals. During work periodsthe participants'behaviorswere to be monitored in terms of "on task behaviors"only. In this particular setting, the main behaviorsobservedwere "no talking to others,""no touching others," and"attendanceto the work sample." The initial work sampleswere basedon the participant'sindividual IEP/IHPs.The consultantpersonallytrained eachparticipanton the first work sampleso that when the group met for the first time, the work periodscould begin immediately,without time for training during the "workshopsession." Token Systemof Compensation

The plan was to developa systemof compensationfor the participants whereby a token economywould be established.Initially,

N

00

......

3.

2.

1. upper half of paper; all papers must be

ink pad; paper all same color.

upper half of paper.

paper.

One sheet i. to he

FIGURE 2. Exampleof a work sample.

thr"" colors of

r.olorR of !1ap p r.

left blank.

rubber stamps;

Two different

except use three

2"

correct stamp for each

paper.

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any position with the

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be

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One sheet will

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Paper will

color of paper.

stamped one time in

rubber stamps;

a stamp desiRnatedfor

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Two different

Stamp each paper with

one stamp on each.

stamped with only

Stamp must be on

CRITERIA,_ _ __

Rubber stamp;

MATERIALS

Stamp each paper on

TASK

STAMPING ACTIVITY

JeanneE. Lewin

183

credit in the form of stars on a card would be earnedmerely for one'sattendance.Later, work productionrate (i.e., numberof tasks correctly completedwithin a specifiedtime) would be the basisfor compensation.Each participant's performance would be rated against hislher past establishedperformance."Raises" would be earnedwhen the individual's productionrate increasedby two percent or some arbitrary percentagerepresentingprogress.Figure 3 shows a data sheetwas developedto documentdaily productivity rates.

Economicand Time Costs The economic and time costs of the STP to the facility are describedas follows. The primary cost of the programwas the allocation of a room in which to implementthe STP, a table on which to work, and two staff membersto superviseit. Other costs included storagespacein which to housethe work samples;an alarm clock or kitchen timer for signalingwork and break periods; and a notebook or file system for organizing the participants' PerformanceDatal Productivity Sheetsand Individual EducationsPlans to which the work samplesrelate. A set of work sampleswould be createdby using a variety of on-site materials and manipulative objectives from the occupationaltherapydepartment. Methods by which to continually upgradethe work samples,to correlatethe work sampleswith the participant'sdevelopmentalareas of strength, to documentthe quality of the participant'swork adjustment,and to remuneratethe participantsvia a token economy would be developedprior to beginningthe program.

PROGRAM CRITIQUE/RESULTS The major obstacleto beginningthe STP was finding a room in which to house the STP. There were no extra rooms so a large bedroomwas used.This meantthat materialsand equipmenthad to be stored elsewhere,transportedand set up each time the program was scheduled.Other staff were indirectly involved in the program. For example,Room Aides were responsiblefor getting the partici-

184 DevelopmentalDisabilities: A Handbookfor OccupationalTherapists CROUP PROGRAM DOCUMENTATION SHEET

(Motor-Langua8e-SociallIabUitaUon Prograll) CHent'a 11811e .:k'. :. o:. ;I.: . ~.: . ,~. :', ;., . _____ _ Page lIullber -1..1_ _ _ _ _ _ _ _ __ Job' 1 Color Sqyf - :;J. Golor.;, Job' 2 _ _ _ _ _ _ _ _ _ _ ___ Job' 3 _ _ _ _ _ _ _ _ _ _ ___

Production RUe PC8. completed Total no. given X 100 • _

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FIGURE 3. Exampleof a completedwork sampledata sheet.

pants physically ready so that they could attend on time. Housekeepingstaff had to alter cleaningand floor waxing schedules.The wheelchairwashingscheduleshad to be changedso that the STP participants'chairswere dry and availablefor use at the program's scheduledtime. .

JeanneE. Lewin

185

The participantswere extremelyenthusiasticabout attendingthe STP. After the consultant"interviewed" one participant to train her on the initial work sample,she returnedto her room and triumphantly announcedto the Room Aides, "They hired me. I got the job!" The first set of staff in chargeof the STPwere the SpecialEducator and the Speechand LanguagePathologist. The program was scheduledto meet twice/weekly, for one hour each session.This was in contrastto the suggestedone hour per day schedule.Four 10 minute work sessionsalternatedwith three five minute break periods, and the last five minutes was reservedfor "clean up." The programseemedto run smoothlyfor three months, both from staff reports and the consultant'sobservations. In the fourth month of operationtherewere set-backsin the form of staff turnover, a commonoccurrencein a residentialfacility. The Special Educator and the Speech and Language Pathologist resigned.The STP was "on hold" for about sevenweekswhile new staff were being assignedto the programby the administration. The consultantprovided in servicetraining to the new staff in the same manner as the first group but due to the educationaldifferencesbetweenthe new staff and that of the first group, numerous complaintsabout the feasibility of the program soon beganto surface. The most prevalentcomplaintswere (1) the data sheetwas too complicatedto use; (2) it was too difficult to get all of the participants to work at one time; and (3) more help was neededas there was too much to do for two staff persons.Other complaintsrelated to the Room Aides, who failed to get the participantsreadyon time, and the exterminatorsand floor waxers from housekeeping,who choseto do their jobs during the time reservedfor the STP and in the program'sdesignatedroom. After several months of sporadic operationsthe consultant requesteda meetingwith the staff and supervisorypersonnelinvolved with the therapyprogrammingto discussand resolve the obstacles that seemedto continually occur. As a result of this meeting, the SpecialEducator,whosestudentsattendedthe STP, replacedone of the staff previouslyassignedto the program.A methodfor controlling the interferencesby housekeepingstaff was devised, and the staff directly assignedto the STP were allowed to clear up misunderstandings.regardingthe work sampledata sheets.In retrospect,

186 DevelopmentalDisabilities: A Handbookfor OccupationalTherapists

this meetingshould have occurredlong before theseproblemsbecameso pronouncedand debilitating to the STP. After one year of operation,the STP still appearsto be functioning at its initial level. The token economy is just being implemented, although the participantshave not experiencedthe challengesof a work program. Work sampleshave just recently been upgraded.The suggestedhalf-day schedulefor the programhas not yet occurred,and with the presenttwo hours per week that the participants do spend in the STP, it would be unrealistic to use this sessionto evaluatetheir work adjustmentabilities. The advantagesof the program still outweigh the disadvantages. Although it is difficult for the staff at times, the administrationis supportiveof the program and the participantsdefinitdy look forward to attendingit. The benefit of developingwork adjustmentexperienceswithin the facility is great. The advantagesof the STP are that I) the residents are more motivated to participatein the tasks presentedin a work-related atmospherethan they were when similar activities were presentedin an individual therapysetting; 2) the work adjustment experiencesthat the programoffers each participantcan only be developedin such a group setting; and 3) the participantsare all developinga senseof reality orientationwith respectto the time of the day and the days of the week. They eagerly look forward to 11:00 A.M. on Tuesdaysand Thursdaysand question the staff if there appearsto be a disruption in their scheduledprogram. The main disadvantageof the STP is the impact of the program on the ancillary staff (i.e., Room Aides and housekeepingstaff), on staff involved with the residentjust prior to the resident'spreparation for attendingthe program,and on thosewho havedutiesrelated to the maintenanceof the room in which the programoccurs. Staff have noticed definite academicand social maturity gains within the individual STP participants.One resident'sfrequent inappropriateoutburstshave decreasedmarkedly becausehe is allowed to attend or remain in the programonly if he is socially appropriate. Another resident has developed functional use of numericalconceptswhich he is able to apply outsideof the STP. A senseof competition to excel and achieve is also developing between two brotherswho are both in the program.

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In retrospect,establishingdefinite time lines for initiating various phasesof the programmight havebeenhelpful. Also, having a staff overlap between"new" and "departing" staff might have eliminatedsomeof the detailedinservicetraining that had to be repeated. However, the problem of staff turnover is the single most threatening elementto the smoothflow of sucha program,and the luxury of having staff overlap may not always be possible. In addition to the obstaclesto the STP as detailed above, the occupationaltherapyconsultant'sinability to directly supervisethe program during the first few sessionsseemed to influence its smooth flow. The role of the occupationaltherapy consultantincluded other responsibilitiesto the facility besidethe STP. Therefore, the four hours per week could not be spentexclusivelyon this project. When problemsor questionsaroseregardingthe STP, the staff had to wait until the following week to voice concernsand seekadvice. While the consultantcan proposeprogramsor makesuggestions, shecannotdirectly implementeither (Jaffe, 1988). In this situation, the occupationaltherapyconsultanthad no control over the selection of personnelselectedto run the STP, although her suggestion to assignone of the COTA's to this programwas accepted.Shewas unable to control the STP'sdaily schedule,thereforethe administration scheduledit on a day other than her scheduledconsultation day. CONCLUSION The key elementin the successof such an endeavoras the STP appearsto be dependentupon the staff who are directly involved with its implementation.This seemsto be independentof the clarity with which the program is written or who is indirectly supervising it. The consultant'sability to motivate the staff directly involved in the program is a key factor in their intrinsic commitment to the program. The occupationaltherapy consultantcan serve as a resourcefor upgradingthe work samples,designingnew ones, and evaluatingthe participants'competenciesin the program. The STP addressesthe pressing need, presentedby Brolin

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(1982), to realign the educationalprogramswith the rehabilitation programs.Appropriate techniquesneed to be developedthat will aid individuals with mental retardationin their transitionsfrom the classroomto the community. Vocational preparationof the individual with developmentaldisabilities is an extremely complex process. However according to Brolin (1976, p. 65) " . . . Society placesa high value on the activity of work, (so) let us give everyone the opportunity for achievingthis important goal."

REFERENCES Brolin, D. (1976). Vocational preparation of retarded citizens. Columbus, OH: CharlesE. Merrill. Brolin, D. (1982). Vocational preparation of personswith handicaps(2nd ed.). Columbus,OH: CharlesE. Merrill. Gronlund, N. (1981). Measurementand evaluation in teaching (4th ed.). New York: Macmillan PublishingCo., Inc. Hopkins, H. & Smith, H. (1983). Willard and Spackman'sOccupationalTherapy (6th ed.). Philadelphia,PA: Lippincott Co. Jaffe, E. (1988). The occupationaltherapistas a consultant:A model of community consultation.OccupationalTherapyin Health Care, 5 (1), 87-108. Kielhofner, B., Burke, 1., & Jgi, C. (1980). A model of humanoccupation,Part 4. Assessmentand intervention.AmericanJournal of OccupationalTherapy, 34 (12), 777-788. Reilly, M. (1962). Occupationaltherapy can be one of the great ideas of 20th century medicine.AmericanJournal of OccupationalTherapy, 16 (1), 1-9. Scott, M., Ebbert, A., & Price. D. (1986). Assessingand teachingemployability skills with prevocationalwork samples.The Directive Teacher,8 (1), 3-5. Stephens,T.M. (1978). Social skills in the classroom. Columbus, OH: Cedars Press,Inc. Wehman,P., Kregel, J., & Barcus,J.M. (1985). From school to work: A vocational transition model for handicappedstudents.ExceptionalChildren, 52 (1), 25-27. Weisgerber,R., Dahl, P., & Appleby, 1. (1981). Training the handicappedfor productiveemployment.Rockville, MD: Aspen SystemsCorp.

Developmental Growth in "ACTION": A Pilot Program for the Adult Retarded JaneT. Herrick, OTR Helen E. Lowe, OTR

SUMMARY. This paperdescribesa pilot programin a work activity center. Called the "ACTION Group," the project involved six clientswhoseselectionwas basedon low productivity rateson work assignments.The purposeof the "ACTION Group" was to allow clientswho were experiencingfailure to be motivatedby tasksstructured to their performanceneeds.The hypothesisis that productivity improveswhen clients are presentedwith purposefuland appealing activities at their developmentallevel.

Shelteredworkshopshave beenfor many years a vocationalsetting for the adult retardedpopulation. Thesefacilities ideally provide assessment,training, and employment.Work activity centers were developedfor those individuals with retardationwho could benefit from a work-relatedprogram,but for various reasonswere not appropriatefor the more stringentdemandsof shelteredworkshops.The researchfor this pilot project was done at the work activity levels. BACKGROUND

The"ACTION" programwas designedand implementedbyoccupational therapistsat the New Opportunity Workshop, Inc., a work activity center in Pasadena,California. It was designedto JaneT. Herrick and Helen E. Lowe are consultantsin mental retardationand the authorsof the Adult Skills EvaluationSurvey for Personswith Mental Retardation (ASES). They are associatedwith the New Opportunity Workshops,Inc., 770 North Fair Oaks Avenue, Pasadena,CA 91103. © 1989 by The Haworth Press,Inc. All rights reserved.

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determine if vocationally unproductiveclients would improve by participating in a structured program of activities appropriate to their developmentallevel. In the Information Packeton Mental Retardation by the American OccupationalTherapyAssociation(Revised 1985), the conceptis acknowledgedthat when activities are significantly related to the developmentalinterestsof the individual, they offer the necessarylearningfor growth or restoration. The New OpportunityWorkshoptrains 60 adult men and women who have a primary diagnosisof mild to moderateretardation.Specializing in packaging,assemblingand mailing, the focus of vocational training is on sub-contractwork for companiesin the Southern California area. Vocational coordinatorsprovide direct client supervisionon the job. One function of the rehabilitationcoordinator is to calculateclient paychecksbasedon the Earned Industrial StandardUnit (EISU). The EISU is basedon the standardnumber of units an able-bodiedpersoncan do in a 50 minute hour. The "ACTION" group was conductedby two occupationaltherapiststo investigatethe conceptthat intensive,structured,developmentally-orientedtraining sessionswould improve vocational potential. One criterion for inclusion in the target group was a productionrate of ten percentor less on the EISU scale. The other requirementwas a current vocational assessmentscore from the Adult Skills EvaluationSurveyfor Personswith Mental Retardation (ASES), (1985). This instrument,developedand publishedby the authors,establishedthe level of client performanceskills and was basic to refining the training methods used in this demonstration project. PROGRAM

Six clients were chosenwho met the criteria of a low production rate and a skills assessment score.A control group of six clientswas identified who also rated ten percentor less on the EISU, and had similar scoreson the ASES. These clients continued working on sub-contractjobs full-time, with no special intervention. The weekly two-and-one-half-hoursessionsfocusedon a variety of work-relatedactivities. Basedon the therapists'researchand experience,they adapteditems from the following assessments: Ge-

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sell DevelopmentalDiagnosis(1974), Bayley Scalesof Infant Development (1969), Vineland Social Maturity Scale (1965), Bruininks-OseretskyTests (1946), Memphis Instrumentsfor Individual Program Planning and Evaluation (1974), and Watch Me Grow (1977). The activities were selectedfrom the five year and underdevelopmental levels at which the participantswere functioning. The tasks were role appropriateand designedto be purposefuland appealing to the clients, motivating active participation, and promoting perception and improved performance.The activities stressedthe sensory functions of attending,listening, and responding.The hypothesiswas that productivity for clients experiencingfailure improved when they were presentedtasksstructuredat their identified performancelevels. The therapistsconductedthe developmentalprogram in a setting that offered a minimum of distraction.The format was work-related and instruction was both verbal and visual. The specific activities chosen reflected the therapists' training in occupational therapy methods,experiencewith this population, and availability of materials within the training center. The order of task presentationfollowed a pattern which was repeatedat each sessionto offer reinforcement. This simple repetitive format provided the opportunity to explore individual abilities and limitations as well as observethe client's methodsof coping with competition, frustration, and failure. Performanceof the "ACTION" participants on individual tasks was monitored by observationand recordedat each session. The numericalvalues of zero, one, and two were used to indicate the level of task competence. The sessionswere divided into the following five areas:

• Matching taskstrained in color, form, size discrimination,ac-

curacy, and decisionmaking. The tasksincluded using simple shapes,formboards,and puzzles;matchingobjectsto pictures; and copying designson paper. • Numbers from one to five were used to develop numerical concepts.This activity included following directions such as countinga specific numberof objects,tapping in rhythm, and counting aloud in numerical sequence.

192 DevelopmentalDisabilities: A Handbookfor OccupationalTherapists

• Exerciseswere designedto improve body image, increaseen-

duranceand postural awareness.One set, performed seated, involved the upperbody with emphasison hands,arms, shoulders and head. The other set, performedstanding, used gross motor abilities such as bending, stretching,and balancing. • Languageactivities centeredaroundlistening and responding. This requiredsuch non-verbalresponsesas pointing to objects and following 3-step sequences.Verbal responsesincluded naming objectsand body parts and answeringquestions. • Vocational projects,with instruction that was both verbal and visual, addressedmanual skills, quality of work, speed,and perseverance.The tasks usedwere folding, collating, sorting, and inspectingwhich representedvarious types of production jobs sub-contractedin a work activity center.

APPROACH During this project, the therapistsworked closely with the vocational coordinatorsand the rehabilitation coordinator. Scheduling staff members to observe clients functioning in this controlled learning environmentenabledthem to recognizeindividual competencies and potential for improvementin production. It also gave them opportunity to observesocial interactionwhich could then be integratedinto training strategies. The clients selectedfor the"ACTION" group were experiencing chronic failure in their work settingwith problemsrelatedto behavior and productivity. During the pilot program, they maintaineda level of concentrationsatisfactoryfor performanceon work-related jobs. This observationsupportsthe needto presenta variety of tasks to low functioning clients in a structured program in order to achievesuccessin vocational goals. A programof this type should advanceunderstandingof the obstaclesthat affect the behavior,reasoning,and coping mechanisms of adults with retardation under work-related conditions. Gary Kielhofner has aptly stated,

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One of the most severelylimiting features in the life of the severelydisabledis the inability or unwillingnessof others to recognize or grant competenceto their efforts and performancebecausethey differ from the average.What would be a good performancefor a personwith a radically alteredbrain or body? The answerto the questionlies both in the perspective (however limited or deviant) of the individual and the ability of anotherto recognizeand appreciateperformancefrom the sameperspective.(Kielhofner, 1983, p.262)

RESULTS At the conclusion of this pilot project, the difference between production rates of the"ACTION" and control groupswas determined from the EarnedIndustrial StandardUnit records.Thesedata were used to test the statistical significancethrough the use of a t test. The t value was 2.85 which was significant at the + .05 level. Figuresfrom the EISU showedthat threeclients in the"ACTION" group made gains in production while three maintainedtheir previous work level. In the control group, one client gainedin productivity, two maintained the work level, and three lost percentage points.

DISCUSSION The small number of participantsand the short duration of the project dictate caution in interpreting results. However, a practice model such as the"ACTION" group servesto suggestthe needfor further researchon functional performanceof adults with retardation. This pilot project seemsto indicate that work-relatedprogramming, structuredat the client's level of achievement,can improve productivity and behavior. Although therapistsworking with persons with retardation mustbe satisfied with small gains and slow progress,they needto recognizethat personsat all levels of retardation can learn (Schulman,1980).

194 DevelopmentalDisabilities: A Handbookfor OccupationalTherapists

IMPLICATIONS FOR OCCUPATIONAL THERAPY There have been for years forward-looking therapists such as FlorenceCromwell who have advocatedcommunity-basedsettings for the profession.Unfortunately,the tendencyof the occupational therapistto gravitate toward the more secureand lucrative Jobs in traditional and well establishedclinics and institutionsoften makes them unavailableto the populationwhich needsthem in a community setting (Morse, 1987). In her presidentialaddressin 1987, Elnora Gilfoyle challenged therapiststo promote the potential resourcesof personswho are chronically disabled: Occupational therapy's philosophical grounding lies in its commitmentto servecitizenswith severeand chronic disabilities and perceivethem as valued populationswho have a right to human dignity and productive living. Our commitment is not popular becausethe personswe serve are frequently considered"devalued" populationsin America's culture. Society's negative attitude toward chronic impairments is a challenge we must face in our efforts to assure occupational therapy'sposition in the marketplace.(Gilfoyle, 1987, p.779) REFERENCES American OccupationalTherapyAssociation Inc., Division of ProfessionalDevelopment (1981). Mental Retardation, Rockville, MD: American Occupational TherapyAssociation. American Occupational Therapy Foundation Inc., (1977). Watch Me Grow, Rockville, MD: American OccupationalTherapyFoundation,Inc. Bayley, N. (1969). BayleyScalesof Infant Development,New York: The Psychological Corporation. Bruininks, R. (1978). Bruininks-OseretskyTest of Motor Proficiency, Circle Pines,MN: American GuidanceServiceInc. Doll, E. (1965). Vineland Social Maturity Scale, Circle Pines, MN: American GuidanceServiceInc_ Gesell, A. and Amatrada,C. (1974). DevelopmentalDiagnoses2nd ed. Maryland: Harper & Row. Gilfoyle, E. (1987). Creativepartnerships:The profession'splan, AmericanJournal of OccupationalTherapy41, 779-781.

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Herrick, J. and Lowe, H. (1985). The Adult Skills Evaluation SU11leyfor Persons with Mental Retardation,Pasadena,CA: Publishedby the authors. Kielhofner, G. (1983). Health Through Occupation, Philadelphia, PA: F.A. Davis. Memphis State University (1974). Project Memphis Instrumentsfor Individual Program Planning and Evaluation, Belmont, CA: Lear Siegler, Inc./Fearon. Morse, A. (1987). A cultural intervention model for developmentallydisabled adults: An expandedrole for occupationaltherapists,OccupationalTherapyin Health Care, 4, 103-113. Schulman,E. (1980), Focus on the RetardedAdult, St. Louis, MO: C. V. Mosby

Co.

Options: An Occupational Therapy Transition Program for Adolescents with Developmental Disabilities JeanneJackson,MA, OTR Allyn Rankin, OTR Sue Siefken, MA, OTR FlorenceClark, PhD, OTR, FAOTA

SUMMARY. This article discussesa grant-fundedoccupational

therapyindependentliving skills transition programfor adolescents with developmentaldisabilities on a non-mainstreamed high school campus.The Options Program was designedto provide intensive transitionservicesthrough its emphasison exploringand broadening the range of individuals' choices' about employment, living arrangements,and social activities. The assessmentprocedure,program model, curriculum goals, and intervention strategiesare presented. JeanneJacksonis Adjunct Instructor, Departmentof OccupationalTherapy, University of SouthernCalifornia; and Options ProgramDirector, Hope Special EducationCenter.Allyn Rankin is an Options ProgramPreceptor,Hope Special Education Center. Sue Siefken is an Options Program Preceptor,Hope Special EducationCenter. FlorenceClark is AssociateProfessorand Chair, Department of OccupationalTherapy,University of SouthernCalifornia; and Project Director of the OSERSGrant #G 008715563. The authorswish to gratefully acknowledgeJudy Dona-Bauer,Agnes Harai, Vickie Pennington,Shelly Sutfin, and Linda Watson,for their contributionsto the original writing of the Options grant. Carolyn Snyder, deservesrecognition for her contribution to the ideasexpressedin this article. © 1989 by The Haworth Press,Inc. All rights reserved.

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INTRODUCTION

"The transition from school to working life call~ for a range of choicesabout careeroptions, living arrangements,social life and economic goals that often have lifelong consequences"(Will, 1985, p. 1). In this quote,MadelineWill, the AssistantSecretaryof the Office of Special Education and Rehabilitative Services (OSERS),acknowledgesthe comprehensivenatureof the transition from the role of adolescenceto that of adult life. For high school studentswith disabilities, the successfultransition from a structuredand protectedschool environmentto an unstructuredcommunity environmentis often an overwhelmingtask (Pennington& Sharrott,1985). Their taskis further complicatedby a paucity of transitionservicesat both the high school and community levels. As a result, students'desires and efforts to prepare themselvesto assumethe adult role and be productivemembersof society are stifled. Modifying the approachtoward educatingstudentswith disabilitiesand expandingthe transition servicesoffered at the high school and communitylevels are needed. In 1984, OSERSrespondedto theseneedsby establishing"transition" as the decade'spriority of specialeducation(Wills, 1985). This nationalpolicy set asidefunding to develophigh schooltransition programs,to train professionalsto becometransition experts, and to generateresearchon the efficacy of transition programming. Dr. FlorenceClark at the University of SouthernCalifornia Department of Occupational Therapy has received two grants from OSERSand has beenextensivelyinvolved in the designand implementationof transition servicesfor the last 5 years.Initially, funding was awardedto establishan IndependentLiving Skills Transition Center on a mainstreamedhigh school campusfor students with emotional,communication,learning,and multiple disabilities. A more recentgrant enabledan extensionof theseservicesto include transition programmingfor adolescentswith developmental disabilities attendingthe Hope SpecialEducationCenter(Hope), a non-mainstreamed high schoolcampuslocatedin BuenaPark, California. The purposeof this article is to describethe OptionsProgram,an occupationaltherapy transition program for high school students

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with developmentaldisabilities. First, the frame of referenceguiding the design of the programwill be presented.Second,the Options Program, includingassessment procedures,curriculum goals, and the parentcomponentwill be described. FRAME OF REFERENCE

The developmentof the OptionsProgramat the Hope Schoolwas heavily influenced by the philosophical tenetsof the Independent Living Movement (ILM), a grass-rootssocio-political movement which emergedduring the late 1960sand early 1970s.The intent of this movementwas to reshapesociety'sview of disability from one in which the personwith a disability is perceivedas a charity caseto one in which the individual is seen as a productive, responsible memberof society, deservingof the samerights as those without disability (Dejong, 1983). The foundersof the ILM plannedto accomplishthis task by effecting a changein serviceprovision, researchdirection, and legislation for personswith disabilities (Dejong, 1983). The ILM proposeda new perspectiveon disability which expandsopportunities for personswith disabilities to participate in quality life experiences.Four distinguishingconceptsassociatedwith this new perspectivewill be presentedto illustrate our approachtoward the studentswe servethrough the Options Program. The proponentsof the ILM viewed independenceas a mind process(Cole, 1983; Dejong, 1983; Zola, 1983). Ratherthan focusing on the numberof "mundanetasks" a personcan completewithout assistance,advocatesarguedthat self-directionis the critical factor which separatesdisability from independence(Dejong & Wenker, 1983;Varela, 1983; Zola, 1983).They stronglyassertedthat people with disabilities have the right to control their own lives and that self-direction, participation in day-to-day decision making, is of equal importanceto task completion.The proponentsclaimed that, in traditional rehabilitationservices,greateremphasisis placedon the individual's performanceof an activity without assistanceand lesser emphasisis placed on fostering self-direction (Dejong & Wenker, 1983; Varela, 1983). For personswith developmentaldisabilities, this is a vital concern.

200 DevelopmentalDisabilities: A Handbookfor OccupationalTherapists

Studies have shown that one's ability to use proper judgment, interacteffectively with others,and problem solve is often a determining factor in whether one will meet with successor failure within the work setting (Mithaug, Martin, & Agran, 1987). The results of these studies point to the importanceof accepting the broadview of independenceendorsedby the ILM. When this philosophicalshift in the view of independenceis applied to practice,one can seeremarkableopportunitiesfor different approachesand priorities in developingtreatmentgoals.Cultivating a student'sability for self-direction, autonomy, decision making, and problem solving becomesof tantamountimportance. Advocatesof the ILM do not excludeskill acquisitionas a treatment goal, but rather dictate that the processthrough which one learns new skills must always presentopportunitiesfor self-direction and solving problems(Cole, 1987). For example,when programsto promoteemploymentupon graduationare designed,environments must be created which include an clement of choice, presentchallenges,and demandspontaneousdecision making and use of judgment. In addition, ample opportunity to develop and practicetask-specificskills which meet the expectationsof the employer must be allowed. Consistentwith this view of independence,studentsin the Options Program are active participantsin their programming, thus fostering the developmentof self-direction (Cole, 1983). The studentsare expectedto assistin establishingtheir individual programs by expressingtheir preferencesfor job placements,leisure activities, and possible future living situations. Opportunitiesfor skill developmentare presentedin areaswhich the studentidentifies as needed. A secondcritical conceptof the ILM paradigmis the individual's need for and right to engage in risk-taking behaviors. DeJong (1983) stated:"The dignity of risk is at the heartof the Independent Living Movement. Without the possibility of failure, the disabled personlacks true independence,the ultimate mark of humanity, the right to choose"(p. 20). This statementclearly capturesthe message that individuals have a drive for engagingin behaviorsthat createa senseof challengeand involve an elementof risk. Through experimentationwith alternative responsesto daily

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problemsand experiencingthe consequences of their choices,individuals build the resourcesand problem-solvingskills neededto contendwith the future complexitiesof adult roles. Challengesand risks for personswith developmentaldisabilities are often inherent in the unpredictabilityand uncertaintyof everydayevents(Perske, 1972). Despite the need for including risk in their lives, persons with disabilities are often protectedfrom or denied participationin thesedaily challenges(Cole, 1983; Gliedman& Roth, 1980). The ILM rejects this protection, stating that personswith disabilities have the right to confront and conquerthe challengeand dilemmas associatedwith everydayexperiences. If adolescentsare to assumeadult roles, these opportunitiesto experiencesuccessor failure must be readily accessibleand encouraged.The Options Programfocuseson this needto provide nurturing, yet realistic, opportunitiesfor studentsto experiencethe natural consequencesof their choices in a variety of work and communitysettings.Careful attentionis given to encouragingrisktaking behaviorsand participationin challengespresentedby daily life situationsdespite the fact that the challengesmay appeartoo complex and overwhelmingfor the student. The third conceptwhich warrantsdiscussioninvolves the rights of personswith disabilitiesto assumethe variety of roles enjoyedby the non-disabledadult population which may include the roles of family member,worker, volunteer,and social participant.Many of theseroles are, simply, unattainablefor personswith disabilities. The values and beliefs underlying the medical model contribute to the prohibition of personswith disabilities from engagingin the completespectrumof adult roles. Influenced by the values of the medical model, society confines personswith disabilities to either the sick or impaired role (Yerxa, 1983). Societalexpectationsthat the "sick/disabled" individual should be relieved from familial, occupational,and civic responsibilitiesare inherent in the sick or impaired role. Proponentsof the ILM acknowledgetheseexpectations as unjust, claiming that adults with disabilities do not wish to be deprived of the joys and responsibilitiesassociatedwith adult roles (Dejong, 1983). On the contrary, personswith disabilitiesseekthe opportunityto becomeequippedwith the skills neededto participatesuccessfully

202 DevelopmentalDisabilities: A Handbookfor OccupationalTherapists

as a family member,employee,volunteer,and social participant.It is only when personswith disabilities possessthe skills and behavior inherentin adult roles that they are free to choosealternativesin life. The OptionsProgramaddresses this concernraisedby the ILM by facilitating the developmentof skills and behaviorsassociated with a variety of adult roles. Three areasof adult life are emphasized: residencein the least restrictive environment,employment, and participationin a social/leisurenetwork (Halpern, 1985). Finally, if a transition program to further the independenceof studentsis to be developed,one must ask, "What are the various factors which impede the individual's achievementof independence?"The ILM philosophyplacesheavyblameon the rehabilitation process,social attitudes, political controls, and architectural barriersas the major impedimentsto successfulcommunityintegration for personswith disabilities (Varela, 1983). Attitudes of parents, teachers,and rehabilitation professionals can shapean individual's perceptionof his or her abilities (Cole, 1983). A homeor school environmentin which an absenceof challengesexistswill encourageindividualsto remain passiverecipients of life ratherthan active participants.Proponentsof the ILM believe that this is the casein traditional rehabilitationand that theseaspects of the rehabilitationprocessimpedethe acquisitionof independence (Cole, 1983; Dejong, 1983; Zola, 1983). Social barriers toward independencecan occur, for example, when the stigma associatedwith requiring special considerations may bar an employerfrom first hiring someonewith a disability. Political barriersare presentin the laws which creatework disincentives for personswith disabilities. Finally, architecturalbarrierscan be found in the presenceof stairs, as opposedto ramps,which can inhibit a person'saccessto a building. Removingthe barrierspresentin the work and community environmentsand in the political systemis one of the goals of the Options Program. During the assessmentphase,barriers to independencewhich exist within the students'environmentare identified. Plansto changeexisting obstaclesare incorporatedinto the student program. Changing the attitudes of employers, apartment managers,and the community in generalis attemptedthrough commu-

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nity contactsand by teachingparentsto becomeeffective advocates for their adolescents. To summarize,the ILM emphasizesfour themesspecific to transition programmingfor adolescents withdevelopmentaldisabilities. First, environmentsmust be createdwhich stimulate the development of self-direction skills. Second,opportunitiesto engagein risk-taking behaviorsshould be provided. Third, the development of skills consistentwith adult life roles should be encouraged. Fourth, a concertedeffort must be made to remove barrierswhich preventindependence. THE OPTIONS PROGRAM

The OptionsProgramwas designedto addressthe needfor more extensivetransition servicesfor high school studentswith developmental disabilities. The program, in existencesince September, 1988, serves20 of the 110 studentswith developmentaldisabilities school. The Hope School'scurwho attendthis non-mainstreamed riculum offers the studentsindependentliving training and opportunities for campusand community-basedwork experiences.The Options Program is designedto complementthese existing services and to enhancethe students'transition to adult roles. Figure 1 illustratesthe transitionprocessfrom the Hope Schoolto adult community life. One pillar of the bridge depictsthe activities which comprisethe studentrole. The other pillar representsthe activities that studentsmust be preparedto fulfill as adults: employment, independentliving, and effective social interaction. The Hope School'sindependentliving curriculum and vocational experiencesand the Options Programhelp constructthe bridge that spansthe transition from school to community life. The Options Programcontributesto the Hope School curriculum by providing more intensivetransitionservicesthroughits emphasison exploring and broadeningthe rangeof one'schoicesabout employment,living arrangements,and social activities, and creatingopportunities for individuals to gain a variety of experiencesin theseareas.The assessment procedure,curriculum, and parent involvementwill be described.

N

~

Vocational Exploration

OT: Options Program

FIGURE 1

Participating in a social leisure network

Residence in least restrictive environment

Familial Residence

Independent Living Skills

Employment

Class Attendance

School Initiated Social Network

Adult Life

Student Role

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ASSESSMENT The first stageof the Options Programconsistsof an extensive were evaluationof the students'transition needs.Six assessments selectedor designedto elicit information in four domains: 1) taskspecific skills and interestsin the areaof independentliving, work, and leisure activities; 2) self-concept; 3) future aspirations; and 4) self-directionskills. (For the purposeof theseevaluations,selfdirection skills include risk taking, flexibility, persistence,self-initiation, constancyof behavior, decision making, problem solving, judgment, and social interaction skills (Cole, 19"83).) Student assessmentsinclude a naturalisticobservation,the Interest Checklist (Matsutsuyu,1969), the Cantril Ladder (Cantril, 1965), the PiersHarris Self-ConceptScale (Piers, 1985), and a StudentNeedsAssessment.Parents'perceptionsand needsare evaluatedthrough a ParentNeedsAssessment.A combinationof a naturalisticqualitative approach and the traditional quantitative approachwas employed in the assessmentprocedure.Each evaluation used will be described.

StudentAssessments Naturalistic Observation The naturalisticapproachtoward evaluationwas chosento identify the self-directionskills of the studentwhich are difficult to ascertain through more traditional measurementssuch as questionnaires and checklists(Cole, 1983; Guba, 1986). Skills such as risk taking, persistence,problem solving, and self-initiation fall into this domain. For the Options Program,the naturalistic assessment constitutesa significant part of the evaluation procedureand provides information in the domainsof self-direction skills and taskspecific skills and interests. Descriptive data are obtainedthrough direct observationof studentsin three natural settings:home, work or school, and the community. Observingstudentsin a variety of environmentswith varying elements of familiarity, novelty, structure, and flexibility providesinsight into the students'repertoiresof behaviorsand skills which will be neededfor living successfullyin the community.

206 DevelopmentalDisabilities: A Handbookfor OccupationalTherapists

To initiate the observation,the therapistarrives at the student's home in the morning beforethe studentdepartsfor schoolor work. The home setting allows the therapistto observethe studentsin a familiar, routine environment. Interactionsbetweenthe students, siblings, and parentsas well as family attitudesabout the student's capabilitiesare a primary focus for observationin this setting. Studentsare then followed to their work experiencesite, which represents a more structuredenvironment.Task-specificskills, ability for self-direction, and adherenceto rules establishedby the employer are observed.Finally, studentsare observedin an unfamiliar community situation, for example, a store or leisure activity. Again, the focus of the observationis the student'sability for selfdirection. Following the observation,an interview with the student is completedto provide insightsas to his or her own phenomenological experiencein eachsetting. From the observation,a picture of the student'sskills and behaviorsin a variety of settings,important to a successfultransition to adult roles upon graduation,is formulated. QuantitativeEvaluation

Severalquantitativeevaluationswere selectedor designedto assessstudentsin the four domainsmentionedabove.The following paragraphsdescribetheseevaluations. Piers-HamsChildren'sSelf-ConceptScale(Piers, 1985).This is a self-reportinventory which measuresself-conceptin six categories. Studentsare requestedto answer"Yes" or "No" to a variety of descriptivestatementsdesignedto tap their self-perceptionin the areasof intellect and school status,physicalappearance,attribution of anxiety, popularity, happiness,and satisfaction. Interest Checklist (Matsutsuyu,1969). The Interest Checklist is an inventory on which studentsare askedto rate their interestin 80 activities as casual,strong, or none. Cantril Ladder (Cantril, 1965). The Cantril Ladder measures overall life satisfaction.On a nine-stepladder,studentsare askedto indicate where they perceive themselvesin relation to the "best possiblelife" or "worst possiblelife." The studeQts'perceivedlife

Jacksonet at.

207

satisfactionis assessedin the present,5 yearsprior, and 5 yearsinto the future. StudentNeedsAssessments. This questionnairerequires the respondentto identify independentliving needsin the areasof residence, employment,and social activities. Information on specific task performancein each of these areas and future goals is requested. Parent Assessment

Parent NeedsAssessment. This questionnaireasksparentsto rate the degreeof independencetheir adolescents'have achievedin specific daily living tasks and self-direction skills such as decision making and self-initiation. The assessment also asks parentsto describe the student'spresentliving situation, plansfor a future living situation, and which community agencies,if any, the studentcurrently uses. Parents'needswith regard to their adolescentsare solicited. THE CURRICULUM The Options Program, which was implementedin September, 1988, is pictured in Figure 2. The programspansa 4-semesteror 2year time period in which four curriculum themesare covered:independent living exploration, employment exploration, supported work experience,and community linkages.Studentsprogressfrom the first year, where they focus on exploring options, to the second year where they gain practical experience.Each semesterwill be highlighted emphasizingthe objectivesand intervention strategies. SemesterOne focuses on independentliving exploration. Two primary objectives have been specified. The first objective is to introduce studentsto the concept of living in the least restrictive environmentand to assist them in exploring their options in this area.The assumptionis not madethat every studentwill move to an independentliving settingupon graduation.The intent of this objective is to exposethe studentsto a variety of living situationsso that studentsand parentswill be aware of their choicesand will know what existing communityservicescan assistthem in reachingshort

~

SupportedWork

0

Community Linkages

N

T I

A

D U

G R A

SupportedWork

SemesterFour

YEAR TWO SemesterThree

FIGURE 2

Employment Exploration

Independent E Living N Exploration T

M

SemesterTwo

YEAR ONE

SemesterOne

S S E S S

A

Jacksonet al.

209

and long-term residentialgoals. Visits to a variety of settings(residential independentliving training centers, homes of adults with disabilities, and cooperativeliving situations)will assiststudentsto envision themselvesliving independently.In addition, adults with disabilities will serveas important role modelsby sharingwith the studentsthe benefitsand challengesthey encounterin their particular living situations. Studentswill be encouragedto identify their own preferencesfor independentliving through follow-up discussion and activities. Participatingin a social leisure network of friends and actively contributing to the community by taking part in dvic responsibilities are important to the enactmentof adult roles and one's selfesteem.Therefore, the secondobjective is to provide studentsthe opportunityto exploretheir optionsfor leisureactivities and expose them to the conceptof community involvement. Initially, students will take responsibilityfor selectinga variety of social activities in which they wish to engage.As their interestsin particular leisure activities emerge,the studentswill assist in planning a group or individual event in their respectiveareasof interest. Finally, each studentwill developa week-endleisurescheduleand plan the steps neededto carry out his or her week-endactivities successfully. Communityinvolvementis addressedby introducingthe concept of volunteerism.Volunteerexperiencesoffer studentsthe opportunity to fulfill the helper role associatedwith adulthoodrather than their usual "helped" role associatedwith their childhood. As a group, studentswill be expectedto chooseone communityeventfor which they wish to volunteertheir time. The therapistwill organize the volunteer experiencewith the agency and structure the tasks which are requiredof the students. SemesterTwo: EmploymentExploration. The secondsemesteris designedto facilitate students'explorationof various employment optionsand job training agencies.Typically, students'work experiencesdependon the availability of work sites rather than student interest.As part of the OptionsProgram,studentsare encouragedto identify jobs in which they are the most interestedand which they perceiveas matchingtheir personalattributes.Studentscan visit a variety of entry-levelpositionswhich may include clerical assistant, animal care assistant,beautician'saide, and grocer'sassistant,as

210 DevelopmentalDisabilities: A Handbookfor OccupationalTherapists

well as other job sites individually requestedby the student.This processwill lay the groundwork for the third semester,during which work experiencesites basedon eachstudent'sstatedpreferencesare established. The secondobjective for semestertwo is to introducestudentsto job placementand training agencies.As studentsare exposedto an arrayof vocationalpaths,they are able to form more realisticgoals. Often, their goals crystallize aroundthe time of graduationor after graduation.Studentsneedto be awareof stateor communityagencies which offer job training and placementservicesfor persons with disabilities. Strategiesto accomplishthis objective include inviting guestspeakersfrom communityagenciesto discusstheir services with studentsand parents,and visiting adultswith disabilities at their supportedjob sites to discussthe processthrough which they attainedtheir jobs. SemesterThree. Exploration experiencesof the first and second semestersculminatein the secondyear of the Options Programas studentspreparefor graduation.The objectiveof the third semester is to enablethe studentsto gain work experienceat selectedjob sites basedon their interestsand preferencesidentified in semestertwo. Studentswill select a minimum of two non-traditionaljob experiencesin which they will participatefor two semesters.The therapist will be responsiblefor establishingcontactswith employersand providing studentswith job experiencesconsistentwith their interests. While somejudgmenton the part of the therapistwill be utilized in placing the studentsin the jobs of their choice, every attempt will be made to allow the students to select their work experiencesites. Following the model of supportedemployment,studentsinitially will be trainedby therapistsat the work sitesto performjob-specific tasks.After studentsare securein their positions,assistancewill be decreasedgradually,allowing studentsto independentlysolve problems which arise, make spontaneousdecisions,and experiencethe natural consequences of their actions (Cole, 1983). Work experienceswill be structuredto encouragerisk-taking behaviorson the part of the students.If failure occurs,the role of the therapistwill be to guide and supportthe studentin re-evaluatingthe student'sskills,

Jacksonet al.

211

behaviors,and goals, and to modify skills or choosea more appropriate placement. During this semester,therapistswill assumean advocate'srole by working with potential employersto modify their attitudestoward hiring personswith disabilities and expandingjob opportunities beyondtraditional sites. Employerswho are experiencedin hiring personswith developmentaldisabilities and who perceive a goodness-of-fitbetweenthe individual andjob tasksare more apt to request additional students.It is the intention of the program to encouragenew employersto begin the sameproc.ess. SemesterFour: CommunityLinkages.The final semesterprior to graduation is devoted to establishing linkages with appropriate community agencieswhich will provide servicesupon graduation. Kailes and Weil (1985) statedthat many personswith disabilities are often unableto act as their own casemanagersbecausethey lack information about community resources.This concern is felt acutely by parentswho questionhow their adolescents'needswill be met when they can no longer benefit from the high school services and must contendwith complexcommunity systems.To addresstheseconcerns,therapistswill assiststudentsand parentsto strengthencommunity linkageswhich have beenmadethrough the 2 years. Representatives from appropriatecommunityserviceswill be requestedto attendthe student'sfinal IndividualizedEducational Plans(IEP) meetingin orderto facilitate the transferof responsibilities from the high school to adult communityserviceagencies.Assistancewill be provided with the agencies'application process. Finally, studentswill graduatewith a personalresourcebook listing contactswhich have been establishedwith community agenciesin the areasof employment,independentliving, and leisure. A secondstrategyto facilitate the transition processwill be to establisha coalition of potential adult communityserviceproviders for the studentpopulation in the Options Program.The purposeof the coalition will be twofold. First, theseproviderswill serve as a resourcefor the studentin developinghis or her own plans following graduation.Studentswill be given the opportunity to meet the coalition membersin groups and individually to discusstheir options. Second,the coalition will provide an avenuefor networking betweenthe school and the community. Regular meetingswill be

212 DevelopmentalDisabilities: A Handbookfor OccupationalTherapists

held which are both educationaland interactive. The processof problemsolving in regardto different transitionissuesand identifying unaddressed concernswill be a primary focus of the meetings. Parent Group

Parent/caregiver supportis of key importancein attainingthe students' plans and goals. Parentsand caregiversare the student's most consistentadvocates.As the studentsapproachgraduationand adulthood, transition can be seen by parents as "the great unknown." The transition processis complicatedby a lack of information, the numberof choicesthat must be made,the changingrole of the student,and, most importantly, issuesof dependenceversus independencein these emerging adults. For this reason,a parent componentwas incorporatedinto the OptionsProgram,offering education, consultation,and a support network. Through individual and group meetings,parentswill be able to discussthe many issues they will encounteras their sons or daughtersmake the transition into adult community life. Opportunity to receive information, to ask questions,and to meetcommunityserviceprovidersaid parents in coping with the changesthey will face in the future. This opportunity will help to improve parents'advocacyskills and decrease their fear of uncertainty. CONCLUSION

Occupationaltherapyoffers a unique and vital role in the provision of transition servicesto adolescentswith disabilities. The Options Programwas designedto complementthe existing high school high school curriculum and is implementedon a non-mainstreamed campusfor personswith developmentaldisabilities. Program design includesan assessment period, a direct studentservicecomponent, the establishmentof a coalition of community agencies,and a parenteducationcomponent.The contentof our intensivecommunity-basedcurriculum is designedto foster job and independentliving exploration and acquisition. The curriculum comprisesfour

Jacksonet al.

213

modules;studentsprogressfrom exploring vocationaland independent living options to gaining experiencein supportedwork environmentsand to establishinglinkages with community agencies. This progressionwill assistthe studentsto make a smoothertransition to adult communitylife. REFERENCES Cantril, H. (1965). The pattern of humanconcern.New Brunswick: RutgersUniversity Press. Cole, J. A. (1983). Skills training. In N. Crewe & I. Zola (Eds.), Independent living of physically disabledpeople.San Francisco:Jossey-Bass. Dejong, G. (1983). Defining and implementingthe independentliving concept. In N. Crewe & I. Zola (Eds.), Independentliving of physically disabledpeople. San Francisco:Jossey-Bass. Dejong, G., & Wenker,T. (1983). Attendantcare. In N. Crewe& I. Zola (Eds.), Independentliving of physically disabledpeople.San Francisco:Jossey-Bass. Gliedman,J., & Roth, W. (1980). The unexpectedminority. New York: Harcourt Brace Jovanovich. Guba, E. G. (1986). What have we learnedabout naturalisticevaluation?Invitational PlenaryAddress,American Evaluation Association,KansasCity, MO, November1, 1986. Halpern, A. (1985). Transition: A look at the foundation. ExceptionalChildren, 5(6), 470-486. Kailes, J. I., & Weil, M. (1985). People with disabilities and the independent living model. In M. Weil, J. M. Karls & Associates(Eds.), Casemanagement in humanservicepractice. San Francisco:Jossey-BassPublishers. Matsutsuyu,1. S. (1969). The interest checklist. American Journal of Occupational Therapy, 23, 323-328. Mithaug, D. E., Martin, 1. E., & Agran, M. (1987). Adaptability instruction: The goal of transitional programming.ExceptionalChildren, 53(6), 500-505. Pennington,V., & Sharrott, G. W. (1985). The developmentaltasks of adolescenceand the role of occupationaltherapy. In F. S. Cromwell (Ed.), Occupational therapy and adolescentswith disability (Vol. 2). New York: The Haworth Press. Perske,R. (1972). The dignity of risk and the mentally retarded.Mental Retardation, 10. Piers, E. (1985). Piers-HafTischildren'sself-conceptscale, Revisedmanual. Los Angeles: Western PsychologicalServices. Varela, R. A. (1983). Changingsocial attitudesand legislation regardingdisability. In N. Crewe & I. Zola (Eds.), Independentliving of physically disabled people. San Francisco:Jossey-Bass.

214 DevelopmentalDisabilities: A Handbookfor OccupationalTherapists Will, M. (1985). Transition: Linking disabled youth to a productive future.

OSERSNewsin Print, 1(1).

Yerxa, E. J. (1983). Audaciousvalues. In G. Kielhofner (Ed.), Health through occupation:Theoryandpracticein occupationaltherapy. Philadelphia:F. A. Davis. Zola, I. (1983). Toward independentliving: Goalsand dilemmas.In N. Crewe& I. Zola (Eds.), Independentliving of physically disabledpeople. San Francisco: Jossey-Bass.

Grip Strength and Dexterity in Adults with Developmental Delays Carol S. Transon,MOT, OTR Christine K. Nitschke, BS, OTR JamesJ. McPherson,MS, OTR SandiJ. Spaulding,MS, OTR Gai1 A. Rukamp, OTR Lisa M. Anderson,OTR Patricia Hecht, OTR

SUMMARY. The purposeof this study was to determinethe usefulby comparing the ness of dexterity and grip strength assessments scoresof adultswith developmentaldelayswith adult norms.A second purposewas to determinethe correlationsamongthe assessment instruments. Fifty-six developmentally disabled adults performed the box and block test, the nine hole peg test, and grip strength. Males performedsignificantly better on grip strengththan females, but there was no significant difference on dexterity scores. Males scoredsignificantly lower than establishednorms on all testsexcept the left nine hole peg test. Femalesscoreswere significantly lower than norms on all tests except the left and right nine hole peg test. Dexterity test scoreson one side of the body were highly correlated Carol S. Transonis affiliated with St. Coletta'sSchool, W4955 Hwy 18, Jefferson, WI 53545. Christine K. Nitschke is affiliated with Evanston Hospital, 2650 Ridge Rd., Evanston,IL 60201. JamesJ. McPhersonand Sandi 1. Spaulding are affiliated with the Programin OccupationalTherapy, University of Wisconsin-Milwaukee,P.O. Box 413, Milwaukee, WI 53211. Gail A. Rukamp,Lisa M. Anderson,and Patricia Hecht are affiliated with the University of WisconsinMilwaukee. The authorswish to thank the staff of St. Coletta'swith specialthanksto Sister E. Weber, Administrator, for their ongoing supportfor research,and to the subjects who kindly offered their time for this study. Requestsfor reprints should be sent to: Carol S. Transon,SharedTherapeutic Servicesof Wisconsin,3939 S. 92nd Street,Greenfield,WI 53228. © 1989 by The Haworth Press,Inc. All rights reserved.

215

216 DevelopmentalDisabilities: A Handbookfor OccupationalTherapists

with thoseon the other side, but grip strengthwas not highly correlated with dexterity. This suggeststhat occupationaltherapistsneed to treat dexterity and grip as separateentitles. The presentresults may provide guidelinesto determineaverageperformancefor adults with developmentaldelays.

INTRODUCTION

Clinicians haveobservedthat the adult developmentallydisabled have performancedeficits in tasksrequiring dexterity and strength. However, no systematicstudy of thesedifferenceshave beenconducted among the adult developmentallydelayedpopulation. Recently, Mathiowetzet aI., (1985a, 1985b, 1985c) have established adult norms for grip strength,grossmanualdexterity and fine manipulative dexterity. The Jamardynamometerwas usedto measure grip strength,the box and block test to measuregrossmanualdexterity, and the nine hole peg test to evaluatefine manipulativedexterity. Mathiowetz et aI., noted that although thesetestswere used extensivelyin clinics, a lack of standardizednorms had compromised their use as valid assessmentinstruments.A test of these instruments with membersof the adult mentally retarded popUlation would provide clinicians with an estimateof their effectivenessas assessment tools for this population. The primary purposeof this study was to determinethe usefulnessof these assessments by comparingscoresof adult developmentally delayedindividuals with presentlyavailableadult norms. A secondpurposewas to determineif there are correlationsamong the assessment instruments. METHODOLOGY

Subjects Fifty-six adultswith developmentaldisabilities,betweenthe ages of 21 and 66, volunteeredas subjects.The meanage of this sample was 31. There were 28 males and 28 females. Intelligence scores rangedfrom 33 to 70 with a meanof 49.1. None of the subjectshad any physical disabilitieswhich could affect grip strengthor dexter-

Transon et af.

217

ity. All subjectswere enrolledin a residentialfacility, and eachwas his or her own guardian. Procedures

The study took place in the occupationaltherapy clinic at St. Coletta'sSchool, a familiar setting for the subjects.Three testing stationswere set up in the room. The subjectsrotated from one station to the next in an establishedorder. At the first station the experimenterexplainedthe purposeof the study, and the informed consentform was signed by the subject. At station number two anotherexperimentertook strengthmeasurements with a Jamardynamometerand the nine hole peg test. The box and block test were administeredat a third station by anotherexperimenter.All testing was performed using standardizedproceduresas reported by Mathiowetz et aI., (1985a, 1985b, 1985c ). Testing took approximately half an hour for eachsubject. Data Collection

Data were collected by registeredoccupationaltherapistsand senior occupationaltherapy studentswho were trained in test administration. The subjectscarrieda recordingsheetwhich had their identifying code number. On the sheetthere was a place for the examinerto recordthe resultsof eachtest. The subjectperformedeachtest three times and the meanof the threescoreswere usedfor analysis.The resultsof the nine hole peg testwere recordedin numberof seconds requiredto completethe task. The box and block test resultswere indicatedby the numberof blocks moved from one side of the box to the other in sixty seconds.The grip strengthwas measuredin kilogramsusing the Jamardynamometer.At the end of the test, the completedscoresheetwas given to the examinerat the first station in the testing room. Data Analysis

Data for the male and female subjectswere analyzedseparately, then comparedto norms establishedby Mathiowetz et aI., (1985a, 1985b, 1985c). The Dunn-Bonferoni procedure(tD) was used to

218 DevelopmentalDisabilities: A Handbookfor OccupationalTherapists

evaluate18 plannedcontrasts(6 betweenmale and female developmentally delayed subjects; 6 between developmentally delayed male subjects and establishednorms; and 6 between the female scoresand the establishednorms). The two tailed critical value for tD is 18,28 (.95) = 3.28. Strengthand dexterity resultswere correlated for each group using Pearsonproduct moment correlation coefficients.

RESULTS Male and Female Comparisons for the DevelopmentallyDelayedPopulation Male developmentally delayed individuals had significantly greatergrip strengththan femalesfor both right and left hands(t = 5.48, t = 4.97 respectively).There were no noted differencesbetween the two groups for gross dexterity using the box and block test and for fine manipulativedexterity using the nine hole peg tests (Table 1).

DevelopmentallyDelayedSampleCompared to EstablishedNorms Both the male and female groups with developmentallydelays scoredsignificantly lower than the establishednorms for all tests, with the exception of the nine hole peg test for the left hand of malesand both the left and the right handsof females(Table 2).

Correlations Among Grip Strength and Dexterity Variables Left and right hand grip strength was highly correlated among both malesand females.Grip strengthand dexteritywere correlated at low to moderatelevels. Resultsusing the nine hole peg test and the box and block test were more highly correlatedamong males than females.Correlationsfor malesrangedfrom a high of - .7880 for the right handbox and block test/left hand nine hole peg test to a low of - .5961 for the right hand box and block/right hand nine hole peg). Correlationsfor femalesrangedfrom a high of - .6405

219

Transonet al. Table 1: Grip strength and Dexterity Scores of Subjects with Developmental Oisabilities Test

Males (N=28) Mean

Females (N=28) Standard deviation

Mean

2-tailed t-test

Standard deviation

Left grip strength (kg)

11.2

5.7

6.7

2.1

5.48*

Right grip strength (kg)

11.5

4.6

6.6

5.4

4.97*

Left box and block test (N of blocks)

40.7

17.3

40.0

10.0

0.19

Right box and block test (N of blocks)

40.0

14.2

38.9

11. 2

0.33

Left nine hole peg test (sec)

22.7

7.4

20.9

4.5

1. 07

Right nine hole peg test (sec)

21.8

8.5

19.6

3.4

1. 28

CV to 18,26(.95)

3.28

for the right handbox and block/left handnine hole pegto - .4727. for the right hand box and block/right hand nine hole peg test. An inversecorrelationwas noted betweenthe nine hole peg test results and other variables.The nine hole peg test is measuredin seconds,with a higher score indicating poorer performance.Grip strengthis measuredin kilograms, and the box and block test is measuredin the numberof blocks moved in a given time period. For both of thesetests, the higher the score,the better the performance.Thus, a high negativecorrelationbetweenthe nine hole peg test and the box and block test would indicate that the group would have done well on both tests,or poorly on both tests.

220 DevelopmentalDisabilities: A Handbookfor OccupationalTherapists

I!!121§

j!:

Grip strength and Dexterity Scores of Subjects

with Developmental Disabilities Compared with Norms 2A. Males Test

Subjects with developmental disabilities

2-tailed t-test

Norm

Left grip strength (kg)

11.2

5.7

28

42.3

12.5

310

+13.03*

Right grip strength (kg)

11.5

4.6

28

47.4

12.9

310

14.52*

Left box and block test (# of blocks)

40.7

17.3

28

75.4

11.4

310

14.68*

Right box and block test (# of blocks)

40.0

14.2

28

76.9

11.6

310

15.80*

Left nine hole peg test (sec)

22.7

7.4

28

20.6

3.9

310

-2.48

Right nine hole peg test (sec)

21.8

8.5

28

19.0

3.2

310

-3.64*

CV Td 18,26(.95)

3.28

2B. Females Test

2-tailed t-test

Norm

subjects with developmental disabili ties

Left grip strength (kg)

6.7

2.09

28

24.5

7.1

318

13.20*

Right grip strength (kg)

6.6

5.4

28

28.5

7.7

318

14.96*

Left box and block test (# of blocks)

40.0

10.0

28

75.8

9.5

318

19.03*

221

Transon et al. TABLE 2 (continued) 2B. Females Test

Subjects with developmental disabilities

Norm

2-tailed t-test

Right box and block test (# of blocks)

38.9

11.1

28

78.4

10.4

318

19.16*

Left nine hole peg test (sec)

20.9

4.5

28

19.6

3.4

318

-1. 46

Right nine hole peg test (sec)

19.6

3.4

28

17.9

2.8

318

-3.03

CV tD 18,26 (.95)

=

3.28

DISCUSSION There are a number of limitations to the interpretation of the results. First, the sampleswere not divided into age groups, but ratherwere evaluatedas a group and comparedwith norms for the generalpopUlation. A larger samplewould have been conduciveto splitting the groups, thus allowing the researchersto do more detailed analyseswith specific age groups. Second,approximately10% of the subjectswere distractedby the colors of the blocks in the box and block test. When they were directedback to the task, they were able to perform, but this probably affectedthe length of time requiredfor subjectsto completethe test. This implies that the dexterity scoresmay representdifferences in cognition rather than truly measuringdexterity which may be a limitation whenever individuals with developmentallydelays are testedfor manualdexterity. Dexterity test results indicated no differences between sexes. This does not corroboratethe results with normal subjectswhich have shown that females have slightly better dexterity scoresthan do males (Mathiowetz et aI., 1985b, 1985c). Perhapschildhood physical or sportsactivities which might accountfor this difference

222 DevelopmentalDisabilities: A Handbookfor OccupationalTherapists Table 3:

Correlation between strength and Dexterity

in Subjects with Developmental Disabilities A.

Males Right grip strength

Left grip strength

.7445

Right grip strength

Left box Right box and block and block .7004

.5932

.5644 .3794

Left box and block

.9159

Right box and block

Left nine hole peq

Right nine hole peg

-.5267

-.3678

-.4336

-.2531

-.7880

-.6240

-.7566

-.5961

Left nine hole peg

.8198

B. Females Right grip strength Left grip strength Right grip strength Left box and block Right box and block Left nine hole peg

.8494

Left box Right box and block and block

Left nine hole peg

Right nine hole peg

.3668

.3043

-.3941

-.3932

.4240

.3976

-.3011

-.2594

.8927

-.4727

-.5835

-.5181

-.6405

.5823

Transonet al.

223

in the normal populationwere not presentedor emphasizedduring growth for this group. In this study, the grip strength of the males was significantly greaterthan that of females. This is consistentwith the literature basedon the normal population(Mathiowetzet aI., 1985a)and this may be due to differencesin muscle massbetweenmales and females. Lamb (1984) has indicatedthat size of an individual probably is a factor in strength and easeof movement.The difference may also be due to physiologicaldifferences,such as higher androgen levels in males,which may affect the results.(Brooks and Fahey, 1985). It was probablynot the result of work experiencessince males and females were involved in similar activities during the day. The grip strength results indicated that normal individuals are stronger than those who are developmentallydelayed (Table 2). This supports previous work by other researchers(Morris, Vaughan,and Vaccaro,1982). Morris et al. (1982), suggestedthat early plannedinterventionmay improve strengthparameters. Test resultsfor the box and block test demonstratedthat our subjects had less dexterity than normal subjects.This may be due to cognitive problemswhich affect the subject'sability to follow instructions. Down's syndromechildren show a significantly lower level of integration of manipulative movementsthan their nonhandicappedpeers(Moss and Hogg, 1987). It may also be the result of little practicewith theseskills. A third possibility is that thereis a responsedelay to changingenvironmentalconditionssimilar to that noted by Shumway-Cookand Woollacott (1985) during platform perturbationsof postural control. If the subjects had difficulty adaptingto the tasks,their responsetimes would be slower. There was no correlation betweenstrength and dexterity variablesin females,but therewas in males. Furtherresearchis needed to examinethe relationshipbetweenstrengthand dexterity in this population. It is important to note that therapeuticintervention to improve grip strengthwill not necessarilyaffect dexterity abilities. Henry (1968) proposedthe specificity hypothesis,which statesthat motor abilities are specific to a particular task. A high level of strength does not mean a high level of performanceon dexterity

224 DevelopmentalDisabilities: A Handbookfor OccupationalTherapists

tasks (Keogh and Sugden,1985). It is suggestedthat occupational therapyplannedto improve dexterity might focus on dexterity tasks rather than strengtheningactivities. The individuals who were subjectsin this study may not have beeneligible for occupationaltherapyin their youth. With the adoption of Public Law 94-142,Educationof the Handicapped,in 1975, all children were to be educatedand relatedservicessuch as occupationaltherapyhad to be available.Perhapsdifferent resultswould have been obtained if the population tested had received therapy during their early developmentalyears. Janicki and Jacobson (1986) found that the older developmentallydelayedpopulation(80 yearsand older) had lower occupationalperformanceskills than the younger group. Their findings suggestedthat younger individuals may benefit from the provision of active treatmentwhich may not have been availableto the elderly group. However, this difference may have been expectedbasedon aging factors. It might be of interestto occupationaltherapistsworking with the youngerdevelopmentally delayed clients to compare the client's standardized dexterity and grip strengthresults to those reportedin this article. The poor performanceof this group may have implications for the developmentallydelayed population in terms of their performanceof occupationaltaskswhich require manualdexterity. However, this is conjecture,since no set levels of dexterity have been establishedfor specific tasks, and no validity studies have been done to correlatenine hole peg test and box and block test results with occupationalperformancetasks. Mathiowetz et al. (1985b, 1985c) recommendedcare in interpreting box and block and nine hole peg test resultssince they are broad screeningtests. The measurementof treatmentoutcomesin occupationaltherapy among the developmentallydisabled population is limited by the lack of standardizedassessments availablefor use with this population. Dexterity testing and grip strength measurementsare often usedin the clinic, but interpretationof assessments is inconclusive becauseof the lack of normative performanceinformation for this group. In evaluatingstrength and dexterity of adults with retardation, resultsare comparedto norms establishedon adultswithout pathol-

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225

ogy. However, this comparisonignores the differences that are presentamong individuals with developmentaldisabilities. Therapists do not have specific guidelinesto determinehow the individuals in this group may compareto their peerswho are developmentally delayed. That is, there may be difficulty with dexterity as a result of the problem of the developmentaldelay, rather than a problem specifically with dexterity. There may be two overlapping normal distributions of scores, one for individuals with developmentaldisabilities and a second one for the general population. Future study, by testing a larger sampleof the populationwith developmentaldelaysmight help determine if there is a differencefor the group as a whole when comparedto the populationas a whole. This might then provide therapists with reasonableexpectationsfor their clients, basedon data which were gatheredfor the generalpopulationwith developmental disabilities. The presentstudywas doneto analyzegrip strengthand dexterity in a group of individuals with developmentaldisabilities. There were differencesnotedbetweenthe subjectsand the generalpopulation. Therapistswho treat individuals with developmentaldelays might evaluatetheir clients with these data in mind and compare their clients to thesevalues. Although there were not enoughsubjects in this study to considerthesedata as norms for the developmentally delayedpopulation,they may be guidelinesfor the expectations of therapistswho work with clients with developmental delays. It may also be important in recommendingindividuals for shelteredworkshopplacementto note that the strengthand dexterity of the clients may not be within normal limits. The secondmajor finding is that therewere not high correlations betweengrip strengthand measuresof dexterity in this group. Therapistswho treat clients for dexterity and strengthproblemsneed to rememberthat working with one aspectof hand function, such as grip strengthwill not necessarilylead to improvementin another area,such as fine hand dexterity. It is recommendedthat therapists needto considernot only testing, but also treating the problemsof both grip strengthand dexterity.

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REFERENCES Brook, G. A. & Fahey,T. D. (1985). Exercisephysiology:Human bioenergetics and its application. New York: MacMillan PublishingCo. Henry, F. M. (1968). Specificity versusgeneralityin learningmotor skill. In R.C. Brown and G.S. Kenyon (Eds.) Classicalstudieson physicalactivity. Englewood Cliffs, N.J.: Prentice-Hall. Janicki, M. P. & Jacobson,J. W. (1986). Generaltrendsin sensory,physical, and behavioralabilities amongolder mentally retardedpersons.AmericanJournal

of Mental Deficiency,90, 490-500.

Keogh, J. & Sugden,D. (1985). Movementskill development.New York: MacMillan PublishingCo. Lamb, D. R. (1984). Physiologyof exercise.New York: MacMillan Publishing Co. Mathiowetz, V., Kashman,N., Volland, G., Weber, K., Dowe, M., & Rogers, S. (1985a). Grip and pinch strength: normative data for adults. Archivesof PhysicalMedicineand Rehabilitation,66, 69-72. Mathiowetz,V., Volland, G., Kashman,N., & Weber,K., (1985b).Adult norms for the box and block test of manual dexterity. AmericanJournal of Occupational Therapy,39(6),386-391. Mathiowetz,V., Weber,K., Kashman,N., & Volland, G., (1985c).Adult norms for the nine hole peg test of finger dexterity. OccupationalTherapyJournal of Research,5(1), 25-38. Morris, A. F., Vaghan,S. E., & Vaccaro(1982). Measurementsof neuromuscular tone and strength in Down's syndromechildren. Journal of Mental DeficiencyResearch,26, 41-46. Moss, S., & Hogg, J. (1987). The integration of manipulative movementsin children with Down's syndrome and their non-handicappedpeers. Human MovementScience,6, 67-99. Shumway-Cook,A., & Woollacott, M. H. (1985). Dynamicsof postural control in the child with Down syndrome.Physical Therapy,65(9), 1315-1322.

OccupationalTherapy in OperationOutreach: CommunityBasedApproach to AdaptedPositioningEquipment JanetD. Stout, MS, OTR Judy Atkins, OTR Carolyn Hamann,OTR

SUMMARY. A mobile outreach program is presentedhere as a responseto the rapidly expandingdemandfor occupationaltherapy servicesin the field of developmentaldisabilities. Historical overview of Operation Outreach will include discussion of societal trends influencing the program as well as factual information specific to the Indiana University (IU) experience.Demand for increasedproductivity and efficiency with cost containment led to IU's modified truck, housinga completemobile adaptedequipment laboratory,for convenienton-site evaluationsand serviceof wheelchairs and custom designedpositioning equipment.OperationOutreachwas designedfor the developmentallydisabledto help address the needsof the whole personin his own environment,to enhance well ness,and to improve quality of life. Janet Stout is an assistantprofessorin the occupationaltherapy program at IndianaUniversity Schoolof Medicine, Indianapolis,IN 46223. Judy Atkins and Carolyn Hamannare supervisorand assistantsupervisor,respectively,in the OccupationalTherapyDepartmentat the JamesWhitcomb Riley Hospital for Children, IndianaUniversity Hospitals,Indianapolis,IN 46223. The authors would like to express thanks to Celestine Hamant and Pat Griswold for their valuableassistanceand support,and to Anita Slominski for the vision and wisdom to focus on the patients'needsin a changingworld of medicine. Sincereappreciationis also extendedto the Riley CheerGuild Association, and to the Indiana University Hospitals. Without their supportthis outreachprogram would not have beenpossible. © 1989 by The Haworth Press,Inc. All rights reserved.

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228 DevelopmentalDisabilities: A Handbookfor OccupationalTherapists

HISTORICAL OVERVIEW

The United StatesDepartmentof Health, Educationand Welfare (now called the Departmentof Health and Human Services)recognized almost 20 yearsago a trend toward decentralizationin delivery of rehabilitationservices.Its 1969report indicatedthat rehabilitation enterprisein the United Statesat that time was essentiallya centralizedservicedelivery system."Although occasionalattempts are made to bring the service closer to the consumer,remoteness and disassociationfrom clients still are more commonthan localization and communitycontiguity." The report also expoundedon the problem associatedwith geographical maldistribution of services,pointing out that "the more centralizedthe system,the greaterwill be the numberof disabled personswho have to inconveniencethemselvessubstantiallyto establish communicationwith the helping source." The one children'shospital in Indiana was an example,being centrally located in Indianapolisand requiring up to a four hour drive for clients in outlying areasto reachthe hospital. As a result of the national decentralizationtrend, legislation in the state of Indiana resulted in developmentof community based carecentersfor the developmentallydisabled.The resultingpediatric nursinghomeconceptallowed children and adultsto be returned to their communitiesand closerto their families' homes.Often being incorporatedinto local school, work, recreational,and camp programs,thesedevelopmentallydisabled children and adults require adaptedseatingto enhancetheir community independence. Stateschoolshad providedsomeclientswith adaptedseatingwhich neededcontinuedmonitoring. Turning from the pastto look at perspectiveson the future, Taira (1985) states The escalatingcosts of hospital care have been the primary incentivesfor moving patientsout of acute settingsand thus increasingthe need for occupationaltherapy servicesin the community. Yet, relatively few therapistshave moved from the medicalmodel eventhough the needexistsand the legislation encouragesthat servicebe provided in the leastrestrictive alternative.

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Shannon(1985) supportscommunity basedpracticestating, Given the holistic perspectiveof the profession, its broad knowledge base and technologybuilt upon the requirements for daily living, occupationaltherapyhasa uniqueopportunity to strengthenits viability in the communityand ultimately, its viability in promotinga more healthysociety. THE INDIANA UNIVERSITY EXPERIENCE

Responsiveness to consumerneedsin the 1970srequireda creative approachfrom the occupationaltherapiststreatingthe community based population. Operation Outreach at Indiana University was initiated in the 1970sby the movementof hospital basedprogramswith a view toward the community.IndianaUniversity therapists beganconsultingin pediatric nursing homesin 1974 and provided inservicesfor nurses,teachers,and therapistswho previously had been working primarily with the geriatric population. After much preparatoryplanning, a pilot project was launchedin 1978 when registeredoccupationaltherapists(OTRs), from the James Whitcomb Riley Hospital for Children and the Cerebral Palsy Clinic at Indiana University Medical Center, begangoing to two pediatric nursing home facilities (one skilled care facility with 150 bedsand one intermediatecare facility with 75 beds).This marked a significant changefrom previouspracticerequiring patientattendanceat the hospital for all wheelchairand positioning needs. Initially a team consistingof a registeredoccupationaltherapist (OTR), and an adaptedequipmenttechniciantraveled in a university owned vehicle carrying equipmentand supplies in cardboard boxes. They were only able to handle evaluations,minor repairs and deliveriesdue to limitations in equipment,supplies,and space, but several advantageswere evident comparedto hospital based treatment. Direct communicationwas possible between therapist and primary caregivers.Patientswere not exhaustedby travel and thereforeprovideda truer picture for positioningevaluations.Issues other than equipment,such as behavior problemsor feeding and groomingdifficulties, could be addressedby seeingthe children in their own environment. As the demandfor the outreachservicesgrew to include more

230 DevelopmentalDisabilities: A Handbookfor OccupationalTherapists

patients and other facilities, the borrowed vehicle and limited equipmentbecameless conduciveto efficiency. However, by this time thoseinvolved had a vision of expandingthe programgoals to include evaluating, managing,and providing more complete services to individuals in the intrastatearea. The apparentneed for expandedserviceswas researchedand documented. Societal trends of diseaseprevention and wellness, community basedcare, and desirefor cost containmentin health care strengthenedthe casefor OperationOutreach'sexpansionto include a special mobile unit. Wellness included all people, regardlessof the presenceof chronic disabling conditions (White, 1981) and therefore was relevantto the nursing home population. Diseaseprevention was addressedby OperationOutreachbecauseearly diagnosis and remediationcould be accomplishedthroughthe programto prevent more serious or permanentlydisabling conditions resulting from poor positioning. Environmentalfactors, as Johnson(1986) pointedout, are important in consideringan individual's total condition, giving credibility to seeingclients in their own settings.Escalatinghealth care costs led to increasingdemandsupon health care systemsto provide productive and efficient serviceswhile containingcosts,which Operation Outreachdoes.The programrecognizesJohnson's(1977) challenge "to set forth our goals clearly and coherently,and to act on our convictionsrecognizingthat it is not only possiblebut necessary to join humanitarianismand accountability."

.

MOBILE POSITIONING LABORATORY

The IndianaUniversity Hospitals'Mobile PositioningLaboratory Unit beganservicein May, 1988, turning Outreachvision into reality (Photo 1). The unit consistsof a 6 passengerpick-up truck with attached5th wheel trailer equipped with drill press, band saw, sander,grinder, table saw, wheelchairtie downs, hand tools, work bench, and storagecompartmentsfor stock (Photo 2). The unit is both heatedfor winter and air conditionedfor summer.Community facilities involved in the programhave installed a specialelectrical outlet on the outside of their facilities, where the mobile unit has accessto necessaryelectrical supply.

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PHOTO 1

Settingsand populationsselVedby the mobile lab are varied. The seventeensettings currently involved include five educational (school) programs,three adult nursing homes, and nine pediatric nursing homesand selVe a total of 690 personshaving a wide variety of diagnoses.The sites, locatedall over Indiana, are visited 210 times per year. To ensurecontinuity of careeachsite has a designatedteamof 120TRs, 1 Certified OccupationalTherapyAssistant(COTA), and 2-3 adaptedequipmenttechnicians.A total of 10 OTRs, 2 COTAs, 6 equipmenttechniciansfrom Indiana University Hospitalsas well as OT affiliate studentsspendpart of their time involved with Operation Outreach.Staff involved in the programhave receivedspecial driver's training to managethe unit, which is similar to a small semitractor-trailer.Employeesare coveredby workman'scompensation and insuranceon the visits just as they are when working in the hospital. Facility personnelare responsiblefor providing a list of patient concernsand equipmentproblemsto occupationalther-

232 DevelopmentalDisabilities: A Handbookfor OccupationalTherapists

PHOTO 2

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apy 4-6 weeksprior to outreachdatesto increaseefficient provision of neededrepairsor replacementson the day of the visit. Bringing this serviceon site benefitsthe facility and its residents in the following ways: - allows for identification of clients needingservices,not previously referred; - improvescommunicationwith primary caretakers; - eliminatestravel stressfor the residents; - decreasesdelaysin provision of service; - decreasestransportationcosts of residents comingfor equipment checks; - decreasespaperworkfor the facility; - provides complete positioning evaluation/serviceon site, including linear designsas well as foam-in-place seatingsystems; and - maximizesconvenience. A secondarybenefit is that there is more room for patientsbeing treatedin the overcrowdedhospitaldepartmentdue to the decreased number of patients transportedfrom other facilities. Patientsstill come to the hospital for medical care since positioning is only one part of their comprehensivehealthcare. Measuringresultsmonetarily, it is estimatedthat eachtrip saves taxpayers$2,000-$10,000dependingupon the distance traveled and the number of patientsor studentsseen. Travel costs are divided amongthe 15-20 residentsor studentsseenper visit, but they are far lessthan the averagecost of transportingeachclient (usually by ambulance)to the medical center and paying for the aide to accompanythem. Patientsare chargedas out-patients,just as any homevisit would be. Many of the patientsare on Medicaid and/or Medicare.Someare on Crippled Children'sFunding, and still others may have private insurance.All of thesefunding sourceshave been supportiveof this program. Funding of the equippedmobile unit was provided through Indiana University Hospitals and the Riley CheerGuild. Both are examplesof communitygenerosityfor a worthwhile project.

234 DevelopmentalDisabilities: A Handbookfor OccupationalTherapists

CASE STUDIES

Each handicappedindividual and his equipment are carefully evaluated by skilled IV Hospital occupational therapists and adaptedequipmenttechnicians.By seeingthe person in his own environmentand by talking with the peoplewho actually provide his care each day, OperationOutreachstaff memberslearn about the individual and his disability. They observefirst-hand the kinds of activities he performsand the specialproblemshe encountersin his everydayroutine. Chairs are always adjustedor modified to fit the child or adult'sown measurements so they provide safety, mobility and maximum comfort. CaseStudy #1

JamesR. is an I8-yearold with a diagnosisof spinabifida (unrepaired) and hydrocephalus.He was initially seenat age 9 yearson an Outreachvisit to his facility. Becauseof his unrepairedbifida, he had spentthe first 9 yearsof his life in a prone position. During an on site visit the facility staff brought this client to the attention of the evaluationteam, feeling that cognitively he could handle more of his own care if he could be positioned more optimally. Following evaluationand consultationwith orthopedicsand neurosurgery,Jameswas positionedupright. After being positioned with proper supportand pressurerelief, he could then propel himself, feed himself, and attendschool. Through increasedcommunicationwith the facility staff, they brought this child to the attentionof the Outreachstaff. Prior to the visits to the facility, they were unawarethat this servicewas available to clients like JamesR. This child was given a new life perspectiveas a direct result of OperationOutreach. CaseStudy #2

ShannonS. is a 7-year-old female with a diagnosisof cerebral palsy spasticquadriplegia.She had been followed in the occupational therapydepartment,requiring numeroustrips and time away from work for her mother. When the question of placementfor Shannonarose,it was comforting to the motherthat Shannoncould

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have her equipment needs met at the nursing home. Shannon's motherwas invited to visit on outreachdaysand to continueto have communicationwith the therapists.In this casethe therapistwho had followed the patient prior to placementis the sameone serving the residentialfacility, preservingcontinuity of care and enhancing rapportwith the family and the facility. CONCLUSION

Medical, legislative, and societal trends toward community basedpracticeand cost containmentled to the currentIndiana University OccupationalTherapyOutreachProgram.The programexpandedfrom visiting 2 sites using a borrowedvehicle and boxed hand tools to the current fully equippedtruck and trailer. The 17 facilities currently involved and third party payershave beensupportive of the project and its benefitsof quality care and cost containment. REFERENCES Johnson,LA. (1968). Wellnessand OccupationalTherapy. The AmericanJournal of OccupationalTherapy, 40, 753-758. Johnson,J.A. (1977). Humanitarianismand accountability:A challengefor occupational therapy on its 60th anniversary.The American Journal of Occupational Therapy, 31,631-637. Rusalem,H. & Baxt, R. (1969). Delivering rehabilitation services.Washington, DC: U.S. Departmentof Health Educationand Welfare. Shannon,P.D. (1985). From anotherperspective:An overview of the issue. Occupational Therapy in Health Care, 2, No.1, p. II. Tiara, E.D. (1985). After treatmentwhat? Roles for occupationaltherapistsin community. OccupationalTherapyin Health Care, 2, No.1, p. 13. White, V.K. (1986). Promoting health and wellness: A theme for the eighties. The AmericanJournal of OccupationalTherapy, 40, 743-748.

The Importance of Program Evaluation: Introduction to the Evaluation of a Community Program for Developmentally Disabled Adults Julie Shaperman,MS, MA, OTR, FAOTA

Objectivedocumentationof patientprogressin occupationaltherapy is required by paymentagenciesand administrators;this has becomean increasinglyimportant part of our work. We often hear our colleaguesexpressthe wish that they had the time and knew how to do somestudiesto show that their programis really producing positive resultsin the day-to-daytreatmentof patients.Yet, few clinicians can organizeand conductthe kind of group comparison studiesthat would be needed. One practicalway to documentprogrameffects is to incorporate an evaluationinto the designof the occupationaltherapyprogram. This could demonstratethat the program was, in fact, achieving statedobjectivesand, at the sametime, it could convinceadministrators that our servicesare of measurablebenefit to patients. Thereis somerisk in conductinga programevaluation,however. It might not demonstratethat the programis as effective as we believe it is. Yet, negativefindings may be as valuable to the program'sdevelopmentas positive findings if we use the information creatively to improve the program. We should not fear a negative result; the therapistshave not failed; the programjust needsrevision. Recently, a very innovative community program for developmentally disabledadults was evaluatedby an outside agencyas a condition of its grant funding. The accompanyingarticle describes the evaluationof this communityprogram.The evaluationshowed © 1989 by The Haworth Press,Inc. All rights reserved.

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238 DevelopmentalDisabilities: A Handbookfor OccupationalTherapists

that the programdid not meet its statedobjectives.The staff members were convincedthat they were providing good serviceto their patients.Although they were disappointedin the resultsof the evaluation, it gave them an opportunity to revise and improve the program. Then, the evaluation'sfindings servedas a basisfor comparison when the revisedprogramwas evaluated.The staff realizedthat the statedobjectiveswere beyond anything that could be expected underthe circumstancesin which the programoperated.The result was a more realistic set of objectivesthat were achievableand measurable. The programevaluationrevealedsomeother findings that helped streamlineprogramprocedures.For example.the evaluationidentified somecharacteristicsof personsin both populations(elderly and developmentallydisabled) which were associatedwith successful home helperpartnerships.The evaluationdemonstratedthe relative effectivenessof various methodsof orienting the older personsin ways of supervisingtheir developmentallydisabled helpers. The evaluationalso revealedan important conceptualflaw in the program: most elderly peoplewho are at risk for placementin a nursing home are too ill to be able to supervisea developmentallydisabled helper. The helper might give some respite to the primary caregiver, but the help would not be sufficient to delay institutionalization, if that was imminent. There are many ways of conductingprogram evaluations;they extendfrom a very informal self-assessment to a highly formalized study by an outsideorganization.The methodologyof the evaluation describedhere followed severalsteps: 1. stateeachprogramobjective; 2. list the activities of the programto meet eachobjective; 3. decideon a standardor level of achievementfor eachactivity/ goal; 4. restateeachstandardas a researchquestion; 5. define a methodologyfor answeringeach researchquestion consideringdesign,sample,measuringinstrumentsalongwith their reliability and validity as well as threatsto validity of the study; and 6. wheneverpossible,blend the measuresand schedulesof the

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evaluationinto thoseof the programso the programwill not be changedby the evaluationprocedures. There are many programsoffered to developmentallydisabled adultstoday to enhancetheir employability and decreasethe cost of their public support. Many such programsend in disappointment for the participantsas well as for the programdevelopers.We need to understandwhat kinds of serviceswill really help developmentally disabledpeople achievetheir greatestpotential. The description of the evaluationis offered as a stimulus to clinicians to incorporate objective evaluation mechanismsinto programs you conduct.The findings, negativeor positive, will strengthenthe program. It is hoped that some of the methodsused in this program evaluationwill be useful in other communitybasedprograms.

An Exchange of ServicesProgram for Adults with Developmental Disabilities: How Effective Was It? Julie Shaperman,MS, MA, OTR, FAOTA CharlesE. Lewis, MD, SeD

SUMMARY. A randomizedcontrolled trial was conductedto evaluate a community program to train, match and place developmentally disabled adults with elderly people who needed help with housekeeping,personal care and companionship.Program goals were not achieved,as employmentof personswith developmental disabilitiesdid not increaseand institutionalizationof elderly people was not delayed.The program did improve feelings of well-being. Programcostsexceeded$200 per person-month.Attrition was high, and survival analysis identified critical periods for retention in the program.

INTRODUCTION There is considerableconcernover the consequences of inappropriate institutionalizationof individuals. It is not surprising, thereJulie Shapermanis a researchoccupationaltherapistat UCLA, formerly in the Departmentof GeneralInternal Medicine, currently in the Departmentof Pediatrics. Charles E. Lewis is Chief, Departmentof General Internal Medicine, and Professorof Medicine, Public Health and Nursing, University.of California, Los Angeles. The authors are grateful to Frederick J. Dorey, PhD, Senior Statistician, UCLA School of Medicine, for valuable assistancein statistical analysisof data. Addresscorrespondence to: Julie Shaperman,UCLA RehabilitationCenter2526, 1000 VeteranAvenue, Los Angeles, CA 90024-1653. The opinions,conclusions,and proposalsin the text are thoseof the authorand do not necessarilyrepresentthe views of the Robert Wood JohnsonFoundation. © 1989 by The Haworth Press,Inc. All rights reserved.

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242 DevelopmentalDisabilities: A Handbookfor OccupationalTherapists

fore, that a proposalfor providing work-training for mentally retarded adults prior to placementwith aged individuals in need of housekeepingand othersupportservicesevokedconsiderableinterest. The ultimate goal of the program was to prevent premature institutionalizationof personsin both groups and to promote paid employmentof mentally retardedpersons.It was suggestedthat the matchingof two partially disabledpersonsto augmenteachcontributor could havea potentiallysynergisingeffect in which eachmight gain more than he or she contributedto the partnership. Such an effort, the CompanionProgram,receivedinitial support in 1981 from the California Departmentof Rehabilitation.An effort to expandthe programand developa model for generalizedusewas funded by the RobertWood JohnsonFoundationbetween1983 and 1986, with the condition that it be evaluatedby an independent outsideagency.The authorsconductedthe evaluationin the form of a randomizedcontrolledtrial with measuresbeforeand after participation in the programof certain dimensionsin both groupsof participants. The evaluatorsdid not plan or operatethe program, so this paperfocusesprimarily on the evaluation. The program had strong intuitive appeal, so it was surprising when it did not demonstrateits effectiveness.Negative resultscan provide very useful information for future programdevelopmentif we understandthe reasonsa programhasfailed, however.The program under evaluationwas not an occupationaltherapy program, but the evaluationmethods,findings and analysisare very relevant to occupationaltherapy. The evaluationdeterminedwhether the program met its objectives. The generalobjective was to match elderly peoplewith personswith mentalretardationand otherdevelopmentaldisabilitiesso they would help each other live independentlyin the community. Specific programobjectiveswere: (1) to train developmentallydisabled adults in skills that would increaseemployability; (2) to decreaseinstitutional careexperiencesof elderly personsby providing personalcare,housekeepingand/orcompanionshipat no cost; (3) to improve the senseof well-being in both groups; (4) to decrease consumptionof community and public servicesamongpersonsin both groupsand thusdemonstratecost effectivenessof the program.

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EVALUATION DESIGN AND METHODOLOGY The evaluation was a randomizedcontrolled trial with lagged control group. Experimental subjects started participating in the program immediately; control subjects waited six months. The waiting time served as a control period, after which the program was offered to those in the control group. A new cohort started every ten weeks and the study extendedover a two and one-half year period. Program staff membersrecruited all personsfor the program; evaluationstaff randomly assignedthem to experimental or control status.Evaluationmeasureswere admiI1isteredto all persons in both groupsat entry and after six months.

Subjects The study included 93 developmentallydisabled adults, called companions,and 99 elderly people, called seniors. Companions' agesrangedfrom 18 to 61 yearswith a meanof 28 for both experimental and control groups. There were 53 females and 40 males. Counselorsand teachersreferredthree-fourthsof the companionsto the program.Over half lived with their families; anotherthird lived aloneor with a roommateand a small numberlived in group homes. At the time the companionsenteredthe program, they said their primary reasonfor participatingwas to help other people (48% of applicants),to learn new skills (18 percent),to get job-relatedexperience (14 percent),to get companionship(12 percent)and for other reasons(8 percent).At enrollment, 75 percentof companionshad no major medical condition; the other 25 percent had conditions such as blindness, deafness,arthritis or cerebral palsy. Threefourths of the applicantsreportedthat they receivedincome supplementssuch as supplementalsecurityincome (SSI) or social security disability payments,and they receivedhealthcarecoveragethrough MediCal or Medicare. Programstaff membersestablishedthe following criteria for admission to the program: desire to participate in all aspectsof the program; ability to follow instructionsand perform tasks under supervision; permissionfrom family; ability to travel to training and work site; ability to lift 25 pounds;absenceof antisocial behavior, substanceabuseand seizures.The samplecompriseda mild to mod-

244 DevelopmentalDisabilities: A Handbookfor OccupationalTherapists

erately developmentallydisabledgroup of peoplewho lived in the southwesternareaof Los AngelesCounty. The averageagesof seniorsin the programwere 75 yearsfor the experimentalgroup and 74 years for the control group; the age range was from 55 to 96 years. There were 75 females and 24 males. Sixty percentof seniorsheard of the program from counselors,professionalcaregiversand throughaffiliation with community groups.Twenty-five percentlived alone; 38 percentlived with a spouseand otherslived with other family membersor caregivers. The seniors enrolled in the program primarily to get help with housekeeping(44 percentof applicants),personalcare(31 percent), and companionship(25 percent). Almost all seniorsreportedsomemajor medical condition; these included heart disease,arthritis, diabetes,cancer and/or stroke. Fewer than 20 percent of seniors received any type of publicly funded income supplement,but 85 percentof experimentaland 93 percentof control subjectshad health care coveragethrough Medicareand/orMediCal. Seniorsreportedusing a large variety of other assistanceprovided mostly by family members,friends or persons hired to work in the houseor yard. Except for health services,the seniors were not large consumersof community and public serVIces. Programstaff membersacceptedseniorsinto the programif they wished to participate, lived in the area, could supervise(or had someoneelsewho could supervise)the companion,could provide a meal in exchangefor eachwork period, and did not have a history of substanceabuseor antisocialbehavior. Staff memberstold seniors that the companionswere developmentallydisabled and that meantthey were slow learners. The Program

Companionsreceivedtraining three half-days a week for six to ten weeks. Training included housekeepingskills, personal care procedures,information on aging and basic safety practices.Seniors joined the companionsfor two to six orientationsessions.Onethird of the seniorscould not attend group sessionsand they were orientedat home.The programstaff then matchedseniorsand com-

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panions, arrangedexchange-of-serviceagreementsand monitored partnerships.Matching was based on needs of seniors, skills of companions,personalityfactors, personalpreferencesand practical considerationssuch as timing, location and availability. Companions worked a few hours a week in exchangefor a meal, but they receivedno money.

The Evaluation Data were gatheredfrom interviews and administrationof relevant instrumentsat enrollment and after six months. Companions' parentsor counselorsand the program staff also provided data on companions.Evaluatorsmonitored the type and duration of each person'sparticipationin the programas a measureof the amountof servicereceived;thesedatawere recordedon life tablesto measure the "survival" of eachpersonand partnership.Finally, the evaluators interviewedeachpersonat the time he or she left the program. Evaluation instrumentswere selectedfor reliability, validity and the availability of normative data. For companions,the Behavior DevelopmentSurvey (Pawlarczk & Schumacher,1983; Research Group, 1979) provided community norms for adults with various levels of mental retardation.The survey is a shortenedversion of the Adaptive Behavior Scale developedby the American Association on Mental Deficiency. The survey has subscaleson Community Self-Sufficiency,Personal-SocialResponsibility,Social Adaptation and Social Living which were of particular interest. As a reliability measure,twelve items from the survey were formulated into a standardizedperformancemeasure;item scores correlated with survey responsesin a range from .69 to .86. For seniors, the SicknessImpact Profile (Bergner et aI., 1976) was used to measurefunctional status.The Lawton Morale Scale (Lawton et aI., 1982) and the Rand General Well-Being (Veit & Ware, 1983) and Rand Social Activities Scales(Donald & Ware, 1982) developedand standardizedin the national Health Insurance Experimentwere used. Health status was recordedon a questionnaire which was a slightly shortenedform of one usedin the UCLA Medical Ambulatory Care Clinic. Resource utilization measures

246 DevelopmentalDisabilities: A Handbookfor OccupationalTherapists

were developedfor the evaluation;inter-raterreliability for that instrumentreacheda correlationof .78. Items on the companions'resourceutilization questionnaireidentified previousschool,work training and employmentexperiences, servicesfrom counselorsat regional centers,vocational rehabilitation agencyservices,health insurancecoverage,income supplements,frequencyof physicianvisits, help with shoppingor transportation, housing arrangementsand informal supports such as socialclubs and help from family and friends. The seniors'resource utilization questionnaireidentified similar data but included more detail on health servicesand community aid. Each resourcearea included questionson who provided the help, the amount of help eachpersoncurrently usedand how it was paid for. Finally, semi-structuredinterviews provided information on expectationsat enrollmentand satisfactionafter six months. Control subjectsdescribedtheir activities and substituteservicesduring the control period. Exit interviewswere conductedby telephone;these concernedexperienceswhile in the program,alternateservicespeople plannedto use and suggestionsfor ways to improve the program. Since evaluatorswere not program staff members;people leaving the programwere very candid in discussingtheir experiences. Data Analysis

Three types of data were examined.First the life table data on types and amountsof participation proved very important because therewas high attrition. Statisticalsurvival analysis(computerprogram BMD PIL) was usedto determinecritical periodsfor leaving the programin relation to programeventssuchas enrollment,training, orientationand placement.The life table data provided a total numberof person-monthsof servicethat clients received.Total program costsdivided by the numberof person-monthsof servicedefined the cost per person-monthof program operation. A second dataset provideda comparisonof programeffectson experimentals versuscontrols. Thesedata were first examinedusing descriptive statistics,and t tests or chi squareanalyseswere used to indicate

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levels of significance.A stepwiseregressionanalysiswas also done to define the characteristicsof personsin relation to the time they left the program(computerprogramBMD P2L). Finally, a content analysis of the qualitative data on expectations,satisfaction and leaving the programwas done.

RESULTS Survival Analysisand Program Effects The survival analysisdemonstrateda statistically significant differencein overall survival distributionsfor companionsversusseniors (P = .005). Companionshad a mediansurvival probability of 23 weeksat enrollment(mediansurvival providesa measureof the half life of the group or is when half of the group at risk has left the program). Median survival, or retention, increasedto 29 weeks if companionsentered training and to 43 weeks if they completed training. After that, retention increasedgradually as the numberof personsat risk of leaving declined.The critical period for companions to leave the programwas the end of training; if they entereda partnership,retention increasedmarkedly. In contrast, the start and end of senior orientation were critical times for them to leave the program. There was a sharp drop in seniors'survival distributionsjust after starting the program. Seniors' mediansurvival probability at enrollmentwas only six weeks. Table 1 showssurvival probabilitiesfor companionsand seniorsat critical program times; Figure 1 shows survival distributions for both populations. The large attrition affected the evaluationof program effects on experimentalversuscontrol subjects.Only 57 percentof companions and 45 percentof seniorsstayedlong enoughto be in a partnership. By the time of the six-month evaluation the numberof companion experimentalsubjectsdecreasedfrom 51 to 30 (a loss of 41 percent)and the numberof seniorsdecreasedfrom 56 to 22 (a loss of 60 percent). Comparisonson the principal measuresemployedin the evalua-

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29 weeks

23 weeks

Median Probability of Surviving Until: 3 weeks 6 weeks 3 months 6 months 1 :l!:ear Survival

Training ends

Training starts

Program enrollment

If Companion Survives Until:

Conditional Survival Probabilities for ComRanions and Seniors

Table 1.

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Seniors

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Figure 1.

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250 DevelopmentalDisabilities: A Handbookfor OccupationalTherapists

tion amongthe remaining30 companionsand 22 seniorexperimentals and their controls indicatedthat there was little difference that could be attributedto programparticipation.Seniorsshoweda significant increasein positive well-being and social well-being (p < .05) amongexperimentalscomparedto controls, after six months. The seniorsin the program scoredhigh on participation in social activities initially; their scoreswere within the range expectedfor the generaladult population.Thus the programincreasedthe sense of social well-being amonga group of alreadysocially active senIorS.

Although not statisticallysignificant, the resultsof the stepwise regressionanalysis suggestedsome interesting relationships between companions'characteristicsand times they left the program. Femalesover age 30 tendedto leave earlier than youngerfemales, or males of any age (p = .054). In their exit interviews, these women over 30 talked about how hard it was to start a new program, and they expressedfears about learning new things. In another finding, companionswho had been in two or more previous work training programstended to stay longer in the Companion Programthan thosewith a history of oneor no previousprograms(p = .058). The oppositeeffect had beenanticipated. A significant finding was that companionswho lived independently or in supervisedindependentliving programsstayedin the programlonger than thosewho lived in group homes(p = .025). Only one-fourthof thoseliving in group homesstayedlong enough to be in a partnership. There were significant relationships between some sub-scale scoresin the BehaviorDevelopmentSurveyand stayingin the program. Higher social living scoreswere associatedwith retention(p = .02). This scale is concernedwith considerationfor others, responsibility, cooperationand use of leisure time. Low scoreson measuresof disruptive behavior, threats of violence, damaging property, use of profane language,rebelliousnessand untrustworthinesswere associatedwith retention (p = .05). Thesetwo subscaleswere correlated(r = - .49) suggestingthat higher social living scoresand fewer maladaptivebehaviorsare associatedwith retention,as would be expected.

Julie Shapennanand Charles E. Lewis

251

Reasonsfor Termination

Sinceattrition was sucha major issuein the evaluation,the interviews at enrollment concerningexpectations,the six-month interviews for thosewho stayed,and the exit interviews for thosewho left were examinedcarefully. At enrollment, the primary reasons companionsjoined the program was to help another person. On leaving, companionstalked primarily about the kind of work they had to do; the idea of helping others paled in comparisonto the tasksthey had to perform (and which representedgiving help). Table 2 lists companions'reasonsfor leaving the program. The companionswho were terminatedby staff membersshowed inappropriatebehavior during training. Companionswho disliked the work or their senior usually said they disliked housework;or complainedthat the seniorsmadeunreasonable demands.If the senior dismissedthe companion,it was especiallytraumatic and the companionwas hesitantto risk anotherplacement.The dissatisfied companionsspokeonly of the tasksinvolved and rarely mentioned their primary reasonfor joining the programto help anotherperson. In contrast,companionswho stayedsix months and were satisfied with the programspokemore about the relationshipwith the senior than about the tasksthey performed. One programobjectivewas to increaseemploymentamongcompanions.Two companions(4 percentof experimentals)left the program to take paid jobs. One had the job beforejoining the program and left becausethe program interfered with the job. The other companiontook additional training and was later employed as a personal care attendant.There was no significant difference between numbersof companionsin the experimentalversusthe control group who becameemployed,and no differencein the number who continuedto receivepublic supportpayments. Seniorswho left the programsoonafter enrollmentsaid that they did not think a developmentallydisabled personwould be able to help them. Thosewho left after a period in a partnershipoften cited excessiveamountsof supervisionthat companionsrequired.Those who stayedin the programand were satisfiedat six monthstalked abouthow hard the companionstried to pleasethem and how much they liked the companions.Although satisfiedseniorssaid compan-

252 DevelopmentalDisabilities: A Handbookfor OccupationalTherapists Table 2. ReasonsCompanions Left the Program N•

78

When Companions Left**

Reason for Leaving

TIT 2

Changed their mind, no transportationor bored with program.

11

T 3

T 4

T 5

4

o

0

0

Terminated by staff

o

4

5

06

Prefer other program

6

6

o

1

Got a job

o

1

2

23

Dislike the work or dislike their aenior

1

1

33

Illness

o

1

o

18

17

10

Total No. of Companions *

Column percentages

**

Times companions left the program

T1

Before training

T2

During training

T3

Before placement

T4

Partner 10 weeks or less

T5

Over 10 weeks as p,artner

15 (19)* 15 (19)

3

16 (21) 8 (10)

13

21 (27) 3 (04)

11 7

Total

26

78 (100)

ions were helpful to them, most seniorsneededhelp for tasksthat were beyondthe skill level of the companions.There was no evidence that companionserviceslessenedthe amount of other services the seniorsneeded. Another program objective was to decreasethe experienceof seniorswith institutional care. Five percent of experimentaland control subjectsdid go to nursing homes,so there was not signifi-

Julie Shapennanand Charles E. Lewis

253

cant difference betweengroups on that measure.Also, review of characteristicsof seniorsin the programshowedthat few seniorsin the program were at risk for institutionalization (Branch & Jette, 1982; Kraus et aI., 1976). Seniorssick enoughto be at risk could not supervisea companionand were not in the program.

Program Costs First, costs were allocated to senior or companion services in relation to the program'soperatingpattern. Next, the total expense shown for eachgroup was divided by the numberof pers~n-months in the life tables.The cost per companion-monthwas $218. and the cost per senior-monthwas $204. The cost per partnership-month was $422. Few companionsworked more than ten hours per week, so these costs must be consideredin relation to the servicesprovided.

DISCUSSION Program Objectives The resultsindicatethat programparticipationdid not achievethe generalobjectivesof increasingemployabilityof companionsor delaying institutionalization of seniors. Participationwas associated with improved feelings of well-being amongseniors;no other program effects were detected.The program was not cost effective; therewas no offset effect from lowering costsof other servicesand the program cost over $200 per person-monthfor each participant with the only measuredbenefit being improved well-being among seniors.The large attrition in both groups suggeststhat there was considerabledissatisfactionwith the program.Thosein both groups who stayedhad higher scoresin social living and social activities and their participation increasedthis socialization. Thus, the program was aptly namedthe "CompanionProgram." In retrospect,closer examinationof risk factors for institutionalization would have revealed that prevention of this phenomenon requires the provision of rather complex support services. Similarly, analysisof the work capacitiesof most developmentallydisabled adults would have suggestedthat even with a reasonablepe-

254 DevelopmentalDisabilities: A Handbookfor OccupationalTherapists

riod of training, theseservicesare generallybeyond their capacity unlessthey are closely supervised. It was also not reasonableto expect developmentallydisabled adultsand their families to renouncethe securityof monthly support underSSI without the assurancethat they could return to their level of disability support in the event their paid employmentattempt failed. Programs that offer supported employment address this problem to someextent. The program staff saw the enthusiasmof the companionsas a commitmentto the program, but this enthusiasmfaded with time. The companionsdid not see themselvesin the worker role and could not makethe transitionto that occupationalrole without interventionsand supportfor that kind of change.Occupationaltherapy input might have made a difference in the companions'participation in the program. Evaluation Methods

Randomizedcontrolledtrials are not frequently usedin the evaluation of occupationaltherapy programsin the community, but this studydemonstratesimportantbenefitsof this design. First, findings indicated that most participantsimproved during their six-month participation in the program. It would be natural to conclude that the programhad beenhighly beneficial to them exceptthat the control subjectsimproved just as much as those in the experimental groups. Without a randomly assignedcontrol group for comparison, one could be misled into believing that changesover time were relatedto programparticipation. A concernvoiced over the useof control groupsin suchprograms is denial of service to the control group. With the lag design, all personswere offered service. It did not appearthat the delay in receiving services had an adverseaffect on controls; they made other arrangementsduring the waiting period. Survival analysisproved to be a very useful methodof analyzing attrition; it identified critical periodsfor seniorsand companionsto leave the programso staff memberscould examineprogramprocedures at those times. This method may prove useful in other costbenefit studies.

Julie Shapermanand Charles E. Lewis

255

CONCLUSION

The partnershipsbetweendevelopmentallydisabled adults and elderly peopleto provide mutual support, delay institutionalization and promote paid employmentof developmentallydisabledpeople did not prove beneficial except to promote the feeling of well-being. The partnershipsdid not producesignificantly more than each personbrought to the programoriginally. Agenciesconcernedwith promotingtheseoutcomesneedto conductor supportevaluationsof the programsthey sponsorso that the programsresult in long term change,personalgrowth and improved quality of life for their clients. REFERENCES Bergner, M., Bobbitt, R.A., Pollard, W.E., Martin, D.P., & Gilson, B.S. (1976). The SicknessImpact Profile: Validation of a health status measure. Medical Care, 14,57-67. Branch, L.G., & Jette,A.M. (1982). A prospectivestudy of long-term-careinstitutionalization amongthe aged. AmericanJournalof Public Health, 72, 13731379. Donald, C.A., & Ware, J.E. Jr. (1982). The quantificationof social contactsand resources.SantaMonica: RAND Corporation, R-2937-HHS. Kraus, A., Spasoff,R., & Beattie, E. (1976). Elderly applicantsto long-termcare institutions. Journal of the American Geriatric Society, 24, 117-125. Lawton, M.P., Moss, M., Fulcomer, M., & Kleban, M.H. (1982). A research and service-orientedmultilevel assessmentinstrument. Journal of Gerontology, 37, 91-99. Pawlarczk, D., & Schumacher,K. (1983). Concurrentvalidity of the behavior developmentsurvey. American Journal of Mental Deficiency, 87, 619-626. ResearchGroup at LantermanGeneral Hospital. (1979). Behavior development survey user's manual, individualized data base. Los Angeles: University of California. Veit, C.T. & Ware, J.E. Jr. (1983). The structureof psychologicalwell-being in generalpopulations.Journal of Consulting and Clinical Psychology,51, 730742.

BOOK REVIEWS

INTEGRATION OF DEVELOPMENTALLY DISABLED INDIVIDUALS INTO THE COMMUNITY. Laird W. Heal, Janell I. Haney, and Angela Novak Amado (Eds.) 2nd Ed. Baltimore, MD: Paul H. BrookesPublishingCo., 1988, 347pages,$24.95. The twenty-threecontributorsto this book are authoritiesin the fields of educationand social sciencerelating to the integrationof the developmentallydisabledindividual into the community. Therapists serving this populationwill find much of interest in this indepth study. The purposeof the book, as indicated in the preface,is to summarize the scholasticeffort that hasbeendevotedto integratingdevelopmentally disabled citizens into the mainstreamof American life. The prefaceincludes a brief overview of each chapter.There are helpful summariesat the end of the chapters. The authorspresentthe history of communityintegrationfrom its beginnings,examiningthe positive aspectsand presentingthe concerns which have arisen. Although many problems remain to be solved, one author held the viewpoint that with adequatesupport servicesany client could succeedin his or her residentialarrangement. Chapter8, on training in community and living skills, is of particular interestto occupationaltherapists.It statesclearly that successfulcommunity living is associatedwith the ability to use daily living skills. The opinion expressedthat critical skills must be taught in elementaryschoolyearswith family cooperationis shared © 1989 by The Haworth Press,Inc. All rights reserved.

257

258 DevelopmentalDisabilities: A Handbookfor OccupationalTherapists

by occupationaltherapistsin the field. The authorindicatesgeneralization of skills and long time behaviormaintenanceare areasneeding researchand programdevelopment. Chapter 10, on meaningful employmentoutcomes,is an excellent resourcefor therapistsin vocationalsituationsdealingwith the developmentallydisabled population. The author reviews the history of work-relatedprogrammingfrom 1966 when the Fair Labor StandardsAct authorizedthe establishmentof work activity centers to servepersonsunableto benefit from preparationfor competitive employment. Various methods of work-related training are analyzed and discussed.The current SupportedEmploymentmodel is presentedpositively along with obstaclesto successfulcompetitive employment.He concludesthat meaningful employment provides personswith severedisabilities the greatestopportunity to interact with non-disabledpeersin a normalizedwork environment. As supplementaryreading,I suggesttherapistsinvolved in helping adults with developmentaldisabilities read Lana Warren'sarticle titled, Helping the DevelopmentallyDisabled Adult (1986) AmericanJournal of OccupationalTherapy, 40, page227. She directs our attention to the great need which exists for therapiststo choose to work with adults with developmentaldisabilities. She stressestheir needfor our focus on purposefulactivity with orientation toward self maintenance,work, and play/leisurewhich clearly relatesus to this group. Jane T. Herrick, OTR

Book Reviews

259

LIVING SKILLS FOR MENTALLY HANDICAPPED PEOPLE. Christine Peck and Chia Swee Hong. London and Sydney:Croom Helm Ltd, ProvidentHouse, 1988, 221 pages. The goal of the authors is to unite theory and practice for the benefit of therapistsand othersentering the field of independence for personswith multiple handicaps.They initially discussthe importanceof multi-disciplinary teamwork, and examinenormalization in a thorough,challengingmanner. Their approachto programmingfor new skills or desiredbehavior changespresentsspecific intervention techniquesthat are analyzed clearly and easily understood.Readerswill appreciatethe frequent examplesof successfultechniquesand the explanation of when and why somemay be contra-indicated. The reasonfor and requirementsof effective assessment are detailed in an informative manner.Definitions of the various typesof are given, and the selectedlisting offers a quick look at assessments the wide rangeof current testsavailablefor the ongoing processof meetingclient needs.This is followed by a chapterthat clearly describes the procedurefor writing treatmentprograms,and shows sampleteachingchartsthat make training consistent. The book dealsin depthwith the conceptsof basic, intermediate and advancedliving skills. Eachlevel is introducedby coveringits characteristicphysical,sensoryand perceptualabilities, then giving many practical training suggestions.Planning for group sessions with related therapeuticactivities is presentedin detail. There are well-structuredexamplesof appropriatemedia, eachoutlining objectives, equipmentand methods. For anyone involved in training people with disabilities to become less dependent,this is an exciting text. It is instructive and useful for practical application. The authors, both occupational therapists,have achievedtheir goal and furnished a very valuable resourcethat encouragesquality programming.

Helen E. Lowe, OTR

260 DevelopmentalDisabilities: A Handbookfor OccupationalTherapists

THE COGNITIVE REHABILITATION WORKBOOK: A SySTEMATIC APPROACHTO IMPROVING INDEPENDENT LIV1NG SKILLS IN BRAIN INJURED ADULTS. Pamela M. Dougherty and Mary Vining Radomski. Rockville, MD: Aspen Publishers, Inc., 1987, 299 pages,$48.00. This Workbookwas designedby two occupationaltherapistsas a treatmenttool for usewith high functioning head-injuredadultsduring the final phaseof the rehabilitation process.The authorsstate that it may also have applicationto other diagnosessuch as stroke, mental illness or mental retardation. The Workbook can be used in treatmentsettingsto teach cognitively impaired individuals to improve their own basic living skills by providing activities that promote self-awareness,independence and compensatorystrategiesfor permanenthigher level cerebral deficits. Gradedactivities are provided which relate to daily living and work behaviors.The goal is to build the necessaryskills for independentliving and successfulreentry into the workplace. The Workbook is divided into four major sections.SectionI provides an overview of cognitive rehabilitation, a descriptionof the Workbook, and how to use the activities in cognitive rehabilitation treatmentsessions.A casestudy is providedto deIponstrateapplication with an actual patient. This is very helpful in providing a clear picture of how one might use and adaptthe activities provided and how long it might take a patientto achievedesiredresults. Section II provides a pre- and post-assessment of work related behaviors. Designed as an adjunct to the information therapists would have reviewed from other sources,this assessmenthelps to determinewhetherthe activities in the Workbook could benefit the patient and the patient'sreadinessto begin treatmentat a specific cognitive level. SectionIII includesinformation for training a patient to develop and use a memory notebook. This is designedto becomea true '''memory prosthesis." A step-by-stepapproach is presentedto train the patient in successfuldevelopmentof a practical guide for rememberingdaily activities. SectionIV containsnine training units in the areasof comprehension, computations,managinga checkingaccount,meal planning,

Book Reviews

261

giving and receiving directions, using resourcessuch as the telephone,understandingand maintainingschedulesand calendars,locating necessary information within newspapers,and personaltime management.Each unit containsgradedactivities divided into three levels of difficulty which are color coded red (easiest),white and blue (hardest).The patient and therapistmutually agreeupon goals for each activity. The activities can thus be tailored to a patient's specific needs.Each unit also containsa personalapplication task which is designedto coincide with a specific need in the patient's current life situation. The Workbook containsall the forms, scoresheets,and instructions neededto completeeachactivity in a three ring binder format. It is designedto be used individually. However, the authors state that someof the activities might be done in group settings,as well. The Workbook providesa useful resourcefor therapiststreating patientsin the final stagesof cognitive rehabilitation. It addresses treatmentneedsin an area in which remaining deficits often limit the patient from achieving his/her maximum potential level of recovery. The authorsacknowledgethat the data obtainedfrom these treatmentactivities have not beenpublished.However, their aim is to sharean approachwhich hasbeensuccessfulfor them over a five year period and to provide a time-savingresourceto otherswho are working with this population.

Anne B. Blakeney, OrR

262 DevelopmentalDisabilities: A Handbookfor OccupationalTherapists

BRAIN INJURY REHABILITATION: A NEUROBEHAVIORAL APPROACH. RodgerL. Wood. Rockville, MD: AspenPublishers, Inc., 1987, 196pages. This is a detailedand extensivelyresearchedbook coveringboth theoretical and clinical implications of a neuropsychologicalapproachto treatmentof brain injury. It is of value to cliniciansworking in structuredbrain injury units or those involved in program design of such units. While this approachhas been describedbefore, this book is unique in documentingits successwith severely brain injured patientsan averageof five yearspost trauma. The book begins with an examinationof problem behaviorsof brain injured people.Dr. Wood points out that problemsof behavior are often more critical than physical deficits in preventingpatients from returning to their families and communities.Generalized rehabilitation centers are often poorly equipped to treat behavior problems,especiallypoor motivation and threateningor embarrassingbehaviors.If thesebehaviorsgo untreatedthey often interferewith the patient'sability to benefit from physical rehabilitation. This has becomewell accepted,as is seenby the proliferation of specializedbrain injury units in rehab centersand centers which treat only brain injury. The neurobehavioralapproachdescribedby Dr. Wood involves first analyzingthe behavior,describingit accuratelyand determining whetherit relatesto eventsin the person'slife or environment. Behaviorswhich occurwith no relationshipto environmentalevents need to be treated medically. Other behaviors are treated via operant conditioning. Organically determinedbehavior disorders describedinclude aggression,disinhibited behaviorsand disorders of arousal,motivation and responsiveness. While these behaviors may be organicin origin, partsof them may be learned.Premorbid personalityis often a factor, and disruptive behaviorsare often rewarded by attention from busy hospital personnel,especially in early stagesof injury. The treatmentdescribedby Dr. Wood took placein the Kemsley Unit of St. Andrew's Hospital Northampton,for severalyearsbeginning in 1979. The Unit was "designedas a specialisedrehabilitation unit for patientswith post traumaticbehaviordisorders,se-

Book Reviews

263

vere enough to prevent rehabilitation taking place in conventional units or the personbeing acceptedback into the community" (pp. 41-42). Treatmentincludedall rehabilitationtherapiesprovidedin a token economy system designed to reinforce specific behaviors. Tokens could be used to obtain rewards and privileges such as meals,cigarettes,use of TV, visits to relatives and movies. Praise and encouragement were also usedas positive reinforcement.Negative punishmentwas utilized in the form of time outs, including use of a locked time-out room for patientsshowingphysicalaggression. Positive punishmenttook the form of aromaticammoniavapor held under the patient'snosefollowing a specific undesirablebehavior. Dr. Wood usesthe single casestudy design to evaluatethe efficacy of treatmentat Kemsley, and devotesa full chapterto discussion of statistical methodsand design, including the limitations of the method. The remainder of the book presentsnumerouscase studiesdescribingthe resultsof the various forms of neuropsychological treatmenton different behaviordisorders,including aggression, inappropriatesexual behaviorsand habits. Behavioral techniques were also applied to rehabilitation therapies including physiotherapy,speechtherapyand ADL training. Of special interest to occupationaltherapistsare severalcasesdescribinghow the token economywas usedto improve self care skills, and how treatment was broken down into simple units that took into accountpatients' cognitive deficits. While Dr. Wood accomplisheshis goal of showingthe statistical efficacy of the treatmentmethodshe uses, I would have liked to learn more about the long term effect of treatmentand the effect of return to communityor other settingson the patientsand their new behaviors.This is a solid addition to the literature on neurobehavioral treatment.It is a scholarlywork and does not make for easy reading,but it providesthe interestedreaderwith valuableinformaof severelybrain injured patients. tion on neurobehavioral treatment

Judith Dicker, OrR

264 DevelopmentalDisabilities: A Handbookfor OccupationalTherapists

SPLINTING THE BURN PATIENT. Carol Walters. Laurel,

MD:RAMSCOPublishingCompany,1987, 97 pages.

In her introduction, the authorstatesthat Splinting the Bum Patient was written to aide therapistswho are unfamiliar or who have

limited experiencewith burn splinting. The book succeedsin meeting this objective and providesthe novice burn therapistwith basic splinting information and guidelines. Splinting the Bum Patient is divided into twelve chapters.The first two chaptersreview basic splinting techniquesand pattern making. Although basic, the information presentedon splinting techniquesis clearly written and practical. The splinting material usedin this book is limited to polyform. Information on the use of alternative plastics for splinting is not provided. The author has extensiveexperiencein splinting with polyform and provides the readerwith tips that will help the novice use polyform more efficiently. The remainingten chaptersare divided anatomicallyinto partsof the body suchas the face, neck, axilla, elbow, hand, knee and foot. Specificchaptersare presentedon the wrist, hand, palm, and thumb web space.The divisions are logical and easyto follow. Splinting and useare techniquesare clear, but protocolsrelatedto philo~ophy brief. Therapistswho are in need of a comprehensiveprimer on splinting the burn patient will find more specific information in Maude Malick's Splinting Handbookfor Bums. The photographsusedin the book are useful and informative but are amateurin quality. Photographsof complex splints using intricate strappingpatternsare sometimesconfusingdue to the use of excessivelabeling and limited sequentialstep-by-stepdetailed instructions. The inexperiencedtherapist may have some difficulty following the directionsprovided for the more difficult splints and strapssuch as thosefor the thumb web space,axilla and elbow. While providing practical instructions, the author does not include any resourcesor a recommendedreading list. The book is addressedto the clinician rather than to the theorist or researcher. Splintingthe BumPatient is a good, basicintroductorymanualto splinting techniquesuseful with burns. It can serve as a valuable resourcefor therapistswho have had limited experienceworking

Book Reviews

265

with the burn patient. The "cookbook" approachused by the author is practical and easily integratedinto the clinical setting. It is highly recommendedas a basic resourcemanual for the therapist with little or no burn experience.

Cynthia Burt, OTR

INTRODUCTION TO RESEARCH: A GUIDE FOR THE HEALTH SCIENCEPROFESSIONAL.Carol K. Oyster, William P. Hanten,and Lela A. Llorens.Philadelphia, PA: 1. B. Lippincott Co., 1988, 239pages,$16.95.

Introduction to Research:A Guidefor the Health ScienceProfessional is intendedto be an introductorymethodstext for the novice researcheror consumerof research.In the first chapter, Oyster, Hantenand Llorens statethat their missionin writing this book is to improve the reputationof the health professionsas bonafide sciencesby promotingempirical investigationas the dominantepistemology. The remainderof ChapterOne providesbasicintroductory guidelinesfor selectinga researchquestion,conductinga literature review and evaluatingresearcharticles.Practicalskills suchas efficient useof the library are includedin this section.The organization of the book then follows the sequenceof the empirical, deductive researchprocess. ChapterTwo is entitled Statingthe Problem.The readeris familiarized with the role of theory as the basis for the selectionof a researchproblemand for the structureof the investigativestrategy. Levels of abstraction'are then organizedinto a model of scientific development,following which basicterminologyis introducedand defined. An extensivediscussionof validity, reliability and sampling is presentedto the readerin ChapterThree. The authorshave based their discussionof thesefundamentalconceptson widely used and acceptedworks suchas thoseof Cook and Campbell,therebycreating a strong chapterfor the knowledgeableresearcher.However,

266 DevelopmentalDisabilities: A Handbookfor OccupationalTherapists

for the novice, this chaptermay prove to be somewhatconfusing due to its complexity and to the use of terms (i.e., parametricand nonparametric)which have not beenpreviouslydefined in the text. ChaptersFour, Five and Six guide the readerthrough three basic categoriesof researchdesign: Pre-experimentaland Experimental; Quasi-Experimentaland Non-experimental.Each design is described and analyzedfor its usefulnessand rigor. The degreeof control, manipulationof variablesand potential for randomization are consideredas the indicatorsof desirability for eachdesign. Data collection techniqueslogically follow the discussionof design. In ChaptersSevenand Eight, the readeris familiarized with methodsby which data are obtained and organizedfor analysis. ChapterEight includes a particularly useful section on instrument construction. Before statisticsare introduced,the authorshave includeda summary chapter,ChapterNine, in which experimentalbias and some superficial ethical considerationsare addressed. The Chapterson data analysis are, in the opinion of this reviewer, the strongestsectionof this text. Statisticsare presentedto the novice in a simplified fashion. The omission of the computational aspectof data analysis gives the readerthe opportunity to develop a conceptualunderstandingof the appli~ation of various statisticalproceduresto data analysiswithout intimidation. The remainingtwo chaptersfocus on practical issuesof research such as use of the computerand guidelinesfor reporting research. While manysectionsarewell written and potentially useful to the researcherwho is beginningto exploreempirical methodology,this text may have limited use for health professionalswho are interestedin research.Firstly, there is an inconsistentlevel of difficulty throughoutthe text. While somechaptersare aimed specifically at the novice, suchas thosedealingwith useof the library and writing a researchreport, other sections(i.e., thoseon validity and reliability) requirethat the readerhaveprerequisiteknowledgeof empirical epistemologybefore conceptsmay be fully understood. Secondly,and most importantly, the ideological underpinnings of this text may be inconsistentwith emergingresearchtrends and needswithin the healthprofessions.In the opinion of this reviewer, while there is a fundamental place for scientific method in the

Book Reviews

267

health sciences,the strict adherenceto positivistic methodology promotedby this book may be in conflict with the level of theory developmentand the natureof the researchquestionsin the health professionals.If, as the authorsstate,the purposeof researchis to generateknowledge,this text missesthe mark. Scientific information is only one aspectof knowledgeand is not sufficient to explain the complex phenomenaof human health and methodsby which healthcan be promotedby the healthprofessions.To leadthe reader to believe that researchwhich does not employ true experimental designis inferior seemsto be a disserviceto the researcheras well as to the health professions.It is this reviewer'sopinion that an introductoryresearchtext must includean overviewof the spectrum and application of empirical and normative approachesto knowledgegeneration,and provide the readerwith the understandingthat the way in which researchquestionsare posedand answeredwill determinethe knowledgewhich emergesfrom the researcheffort. ElizabethDePoy, OTR

SPINAL CORD INJURY: A GUIDE TO FUNCTIONAL OUTCOMES IN OCCUPATIONAL THERAPY. S. Intagliata,Occupational Therapy Series Editor. Rockville, MD: Aspen Publishers, Inc., 1986, 237pages, $44.50. This book is one in a seriesof publicationsfrom the Rehabilitation Institute of Chicago(RIC) and the first volume in a seriesto be completedby the Occupational.TherapyDepartment. As statedin the preface,this book grew out of a needto develop uniform standardsof clinical care which could be used to monitor the appropriateness and effectivenessof occupationaltherapytreatment at RIC. The format focuseson the identificationof behavioral indicators in the recovery processand defines and describesconcepts,evaluationprotocolsand relevanttreatmentplanning. The readerwill find units on evaluation,goal setting, treatment planning, strengtheningactivities, deformity control, a variety of

268 DevelopmentalDisabilities: A Handbookfor OccupationalTherapists

self care and hygiene activities, and discharge planning.Appendices at the end list sourcesof equipmentpresentedin the book as well as a referenceand readinglist. At the beginningof each unit, the authorsprovide the theory of and presentthe rationalefor recommendations on the specific topic being addressed.Included in each unit is a "Summary Chart" which lists goals, physical indicators for each goal and recommendedintervention. Thesesummariesare a bit difficult to interpret initially but once the readerbecomesfamiliar with the format, they provide a quick referenceto treatment.One chart with which this reviewerhad a particularly difficult time was the"Activities of Daily Living Chart." There is no key on the chart itself, thus, the readermust refer back to the abbreviationsin the Introduction to interpret the information. Therapistsand studentsunfamiliar with balancedforearm orthoses (BFO'S) will find the table in the unit on deformity control particularly useful. It containsa table which identifies BFO parts, lists the motionsfacilitated by eachpart, presentsthe mechanismto accomplishthe motion and providesthe functional implications. Perhapsone of the most valuablecontributionsthis book makes is the many photographic illustrations. Treatment techniques, orthotic equipment,self care techniquesand equipmentare clearly presentedso they can be easily duplicated. . Studentsand entry level therapistsworking with spinal cord injured personswill find this book an invaluableaddition to their list of resources.Experiencedtherapistsmay find it a useful meansof refreshingtheir memoryand makingsureall areasof treatmenthave beenconsidered.Thereis, however,little new information for therapistsexperiencedin the treatmentof spinal cord injury.

Mary W. McKenzie, MSED, OTR, FAOYA