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ABSTRACT

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Nathanson, Jeanne H., Ed.Innovations in Special Education andRehabilitation.Office of Special Education and RehabilitativeServices (ED), Washington, DC.9345p.; Photographs will not copy clearly.OSERS News in Print, Room 3129 Switzer Bldg., 330 CSt., S.W., Washington, DC 20202-2524 (free).Collected Works Serials (022)OSERS News in Print; v5 n3 Win 1993

MF01/PCO2 Plus Postage.*Acquired Immune Deficiency Syndrome; *Autism;Behavior Disorders; Child Advocacy; College SchoolCooperation; Community Programs; *Criminals; *DeafBlind; *Disabilities; Educational Innovation;Elementary Secondary Education; *EmotionalDisturbances; Incidental Learning; InterpersonalCommunication; Law Enforcement; Mainstreaming;Police; Preschool Education; Program Development;Special Education; Training; Transitional ProgramsFamily Needs

This bulletin issue contains seven papers describinginnovations in various areas of special education and rehabilitation."Training Criminal Justice Personnel To Recognize Offenders withDisabilities" (Keith L. Curry and others) examines prevalence figuresof disabilities among incarcerated adults and describes the"Effectively Communicating with Handicapped Offenders" trainingprogram. "Preparation of Families for Incidental Teaching andAdvocacy for Their Children with Autism" (Gail G. McGee and others)points out that family supports may be most effective when parentscan participate in designing an individualized program tailored totheir unique family needs. "Serving the Needs of Children with AIDSand Their Families" (Geneva Woodruff) describes families' needs andtypes of programming that meet families' needs, focusing on ProjectSTAR. "Serving Students with Emotional and Behavioral Disordersthrough a Comprehensive Community-Based Approach" (Michael H. Epsteinand others) addresses issues and strategies involved in developingintegrated services. "Transition Planning for Individuals Who AreDeaf and Blind: A Person-Centered Approach" (Phyllis Perlroth andothers) describes the "Transition Occupational Placement forStudents" project. "True or False? Truly Collaborative RelationshipsCan Exist between University and Public School Personnel" (TerriVandercook and others) defines characteristics for collaboration."Early Childhood Community Integration: An Option for PreschoolSpecial Education" (Mary Beth Bruder) describes the Early ChildhoodSpecial Education Community Integration Project at the PediatricResearch and Training Center of the University of Connecticut Schoolof Medicine. (JDD)

NEWS IN PRINT

Innovationsin Special Education and Rehabilitation

. .

Volume V, Number 3

U.S. DEPARTMENT Of EDUCATIONOP.:a of Educational Research and irnpio..sennt

EDUCATIONAL RESOURCES INFORMATIONCENTER (ERIC)

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9 BEST COPY UMW

J.

Richard W RileyJoins Departmentas Secretary ofEducation

On December 21. 1992, President Bill Clintonnominated Richard Wilson Riley for the post of U.S.

Secretary of Education. After confirmation hearings.during which many Senate committee membersexpressed their unequivocal support of his nomination.Riley was confirmed by unanimous consent on January21. 1993. Riley was sworn in as the sixth Secretary ofEducation on January 22. 1993.

Dick Riley was horn in Greenville County. SouthCarolina on January 2. 1933. He received a bachelor'sdegree cum laude in political science from FurmanUniversity in 1954. He served for two years as an officeron a mine-sweeper in the United States Navy. In 1959.Riley received his law degree from the University ofSouth Carolina School of Law. He served as legal counselto the Judiciary Committee of the United States Senateuntil he joined his family's law firm in 1960. Beforebecoming governor in 1978. Riley served as a SouthCarolina state representative from 1963 to 1967, and from1967 to 1977 as state .enator.

In 1980. the people of South Carolina voted to amendthe state constitution. which enabled Riley to be the firstperson in modern South Carolina history to run for asecond term as eovernor. In 1982. he was re-elected to asecond four-year term.

A': governor of South Carolina, Riley made an indeliblemark on public education and gained a national reputationas a leader in the area of quality education reform. Heinitiated and led the fight for the Education Improvement

2 into 1 uo

Act (1984). which, according to a Rand Corporationstudy. was the most comprehensive education reformmeasure in the country. He was a nationally recognizedleader in the areas of public education reform, nuclearwaste disposal. and preventive health care. Hisadministration was marked by conservative fiscalmanagement of government and remarkable progress injob development, quality education, aggressive protectionof the environment. and improved health care for allpeople. In a 1986 Newsweek poll of the nation'sgovernors. Governor Riley was ranked the third mosteffective governor by his colleagues.

Dick Riley has received a number of state and nationalawards including, three times, the South CarolinaEducation Association's Friend of Education Award, the1983 Government Responsibility Award from the MartinLuther King, Jr. Center. and the 1981 Connie Award forspecial conservation achievement by the NationalWildlife Federation. Riley has also served on numerousboards and commissions. including the NationalAssessment Governing Board, the Carnegie FoundationTask Force on Meeting the Needs of Young Children, andthe Duke Endowment. In 1990. Riley served as anInstitute Fellow at the John F. Kennedy School ofGovernment at Harvard University.

Before joining the Clinton Administration. Riley was asenior partner with the South Carolina law firm of Nelson.Mullins. Riley & Scarborough. He is married to the formerAnn Osteen Yarborough. They have four children. i

3

OSERS News In Print

Innovationsin Special Education and

Rehabilitation

Volume V, Number 3Winter 1993

Richard W. RileySecretary

United States Department ofEducation

William L. SmithActing Assistant Secretary

Office of Special Education andRehabilitative Services

Jeanne H. NathansonEditor

Cover photoby Winslow Martin

OSERS News In Print is published

quarterly and is available free ofcharge. Contributors of articles for

this issue expressed their own points

of view, which may not necessarilyreflect the position or policy of the

U.S. Department of Education. The

information in this publication may

be reproduced without further permis-

sion: a credit line would be appreciat-

ed. Please address cumments to: Edi-

tor, OSERS News In Print, Room

3129, Switzer Building, 330 C Street,

S.W., Washington. D.C. 20202-2524.

Training Criminal Justice Personnel to Recognize

Offenders with Disabilities 4

Keith L. Curry, Ph.D. Mark P. Postuszny, Ed.D.Saundra L. Kraska

Preparation of Families for Incidental Teaching and

Advocacy for Their Children with Autism 9

Gail G. McGee Heidi A. Jacobs

Melanie C. Regnier

Serving the Needs of Children with AIDS and

Their Families 14

Geneva Woodruff, Ph.D.

Serving Students with Emotional and

Behavioral Disorders through a Comprehensive

Community-Based Approach 19

Michael H. Epstein

C. Michael Nelson

Kevin Quinn

Lewis Polsgrove

Carla Cumblad

Transition Planning for Individuals Who Are Deaf

and Blind: A Person-Centered Approach 24

Phyllis Perlroth

Shirley Hesche

Ian Pumpian, Ph.D.

Colleen Campbell

True or False? Truly Collaborative Relationships Can

Exist Between University and Public School Personnel . . 31

Terri Vandercook, Ph.D. Jennifer York, Ph.D.

Beth Sullivan, Ph.D.

AN OSERS News In Print SPECIAL FEATURE

Early Childhood Community Integration:

An Option for Preschool Special Education 38

Mary Beth Bruder. Ph.D.

4Winter 1993 3

USE-.RS NeNS s In Print

Training Criminal JusticePersonnel to Recognize Offenders

with Disabilities

Keith L. Curry, Ph.D.

Mark P. Posluszny, Ed.D.

Saundra L. Kraska

The Research Foundation ofThe State University of New York

and Exceptional EducationDepartment, State Lliversity

College at Buffalo

4 Winter 1993

introductionOne needs only to read the dailynewspaper to see that the growth

in the rate of individuals who havebeen arrested and sentenced is climb-ing at a higher rate than the availablecells in local. county, state, or federalcorrectional facilities. Most correction-al facilities at all levels are at or abovecapacity. with occupancy rates rangingfrom 100 to 150 percent. The numbersin Table I reflect adult prison popula-tion growth over the past twenty yearsand are also indicative of the recentsurge in jail and prison construction.

1

NumberIncarcerated in Federaland State Facilities

1970

1980

1988

As of December, 1991State facilitiesFederal facilitiesLocal, city, and

county facilities

Current Total

196,429

315,974

581,609

751,80671,608

422,609

1,246,023

These figures reflect a 28 percentincrease in adult facilities sinceDecember 1988. Equally alarming isdocumentation that in 1987, the latestyear for which there are figures. therewere 91.646 individuals held in publicand private juvenile facilities. This fig-ure undoubtedly approaching100,000 at this date. with the percent-age increase in juvenile facilities paral-leling that in adult facilities.

According to 1990 figures from theU.S. Department of Justice, more than79 percent of all new admissions toprisons in the United States are under35 years of age: 37.5 percent are 24years and under: and the median age ofall admissions is 27 years. ( Sourcebookof Criminal Justice Statistics. 1990. K.Maguire and T. Flanagan. Eds.). Thereis a growing trend to incarce tte inadult prison facilities youth um. r 18years of age who have committed seri-ous crimes. There has also been a sig-nificant increase in the number offemales incarcerated. In addition to the1.236.023 incarcerated, there are2.670.234 individuals on probation andparole.

Jail and prison overcrowding is ofprime concern in most states, bothfrom a humane and from an economicstandpoint. Overcrowded conditionscoupled with the severe budget cut-backs in most states frequently result ina warehousing atmosphere. with adecrease in educational programmingand an increase in facility violence. Ithas become clear to professionals. bothin special education and in corrections,that thousands of individuals with dis-abilities reside within the local. state.and federal prisons and jails.

The ProblemPrevalence figures on incarcerated

adults with retardation have rangedfrom 3.6 perceia to 30 percent (Brownand Court less. 1971: Smykla andWillis. 1981: Santamour and West.1979: and Rockowitz. 1985). If indi-viduals with learning disabilities wereincluded in those studies, the preva-

lence of incarcerated individuals withdisabilities would be much higher. Theprevalence of incarcerated youth withdisabilities ranges from 12 percent to70 percent according to Hockenberry(1980) and Murphy (1986). Ruther-ford, Nelson. and Wolford (1985) esti-mated that the average number ofoffenders with disabilities in state juve-nile correctional programs was 28 per-cent, with 10 percent the average instate adult correctional facilities.According to the Criminal JusticeSourcebook cited above. more than 62percent of admissions to prisons areAfrican American or Hispanic.

From 1985 to 1987 the authorsscreened 1,716 individuals in local jailsin Erie and Niagara counties in NewYork (Development Disabilities/Crim-inal Justice Project) and found, conser-vatively. that 5.3 percent were mildlyretarded, with very strong evidence ofat least another 5 percent being learn-ing disabled. Of those diagnosed ashaving disabilities. 98.9 percent wereschool dropouts. More than 66 percentwere reading at or below the secondf,rade level. The individuals identifiedwith disabilities in the DD/CJ Projecthad arrest records ranging from 1 to 30priors. Without intervention, they weredestined to continue to pass throughthe revolving door of the jail andprison system again and again.

Using a conservative prevalence fig-ure of 10 percent and extrapolating it

to the national adult prison population,one could estimate that nationwideapproximately 120,000 incarceratedindividuals have disabilities and thatapproximately 45.000 of them are 24years of age or younger. The primarydisabling conditions included in thisnumber are mild retardation and learn-ing disabilities. which are often "hid-den- disabilities. Using the same 10percent figure. one would expect tofind another 260.000 individuals withdisabilities on probation and parole.Additionally, there arc probably anoth-er 28.000 youth with disabilities in

juvenile facilities. Excluded from these

disability figures are those whose pri-mary problem is some form of seriousemotional disturbance.

From our experience, we know thefollowing about offenders who aremildly retarded or learning disabledwhen they encounter the criminal jus-tice system.

They are unrecognized at firstcontact because the offender withmild retardation or learning dis-abilities has no physical anomalyand often is verbal enough to givethe impression of being nondis-abled.They often have a desire to pleaseauthority figures or peers, result-ing in a vulnerability to sugges-tion. They are often talked intocommitting a crime: are still onthe crime scene when authoritiesarrive: confess whether guilty ornot, saying what they think a per-son wants to hear. While incarcer-ated. they are prone to be vic-timssocially, sexually. andeconomically.They are most often arrested forpetty "nuisance" crimes over andover again, clogging up an alreadyovercrowded system.They have limited ability to assistin their defense. There is little pleabargaining to reduce charges:therefore, they are convicted of theoffense for which they werearrested, unlike most otherdetainees.Lack of response is often miscon-strued as defiance or noncompli-ance. thus they are often givenlonger sentences than nondisabledpeers for the same crime..Appeals are sought less frequent-ly. and post conviction relief isrequested in very few cases.They are considered poor pros-pects for probation and other alter-natives to incarceration, despiteevidence that this type of sentenceis more effective for them inreducing recidivism.

Winter 1993 5

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aimpirvir-ZL.4111P-A

While incarcerated, they have dif-ficulty adjusting to routine andlearning regulations. thereby accu-mulating rule infractions and writeups. This lessens their chances forextra canteen, extra free time. achoice job. a good cell, or time offfor good behavior while in theinstitution, and lessens theirchance for parole.They rarely take part in rehabilita-tive work or education programs.often because programs offeredare not appropriate for those indi-viduals who are learning disabledor mildly retarded, and alsobecause of their desire to "pass" asnormal. As a result, most of theirtime in prison is spent in menialtasks or meaningless activity.

It is obvious from the sheer numbersof those with disabilities who are in thecriminal justice system that education isneeded to help professionals recognizemildly retarded and learning disabledindividuals, to interact effectively withthem. and to deal with them moreappropriately when they are incarcerat-ed. In fact. many criminal justice sys-tem professionals are actively seekingassistance in managing a population forwhich they have had no training. Thereis also a need to begin to formulatetransition plans to the agencies before

truer /99.?

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release and to prepare criminal justicepersonnel to refer individuals to com-munity agencies upon release.

Project DesignIn 1987-90, with funding from the

U.S. Department of Education's Officeof Special Education and Rehabilita-tive Services, the authors developedmaterials that were designed for pre-s(_ Nice and in-service education forcorrections. law enforcement, sheriffs'departments. youth counselors, proba-tion officers, and others in the criminaljustice system. The Effectively Com-municating with Handicapped Offend-ers (ECHO) training materials consistof eight videotapes, each with a sup-porting manual.

Subsequent to the development ofthe ECHO materials in 1990. fundingwas received from the Office of Spe-cial Education and Rehabilitative Ser-vices to disseminate the materials totrain criminal justice personnel in 15states over a three-year period. ECHOis a train-the-trainer program consist-ing of four days of training: on mildretardation and learning disabilities.and a specific type of serious mentalillness. State leadership personnel incriminal justice fields arrange for andfacilitate ECHO training, and choosekey trainers in corrections, youth facil-

ities, sheriffs' d .partments. and lawenforcement to participate. The ECHOProject provides each central officeprofessional and each trainer complet-ing the program with a set of the train-ing materials for his or her facility oragency. In return, these trainers make acommitment to use the materials totrain rank and file personnel in theirunit. The number of all individualstrained, along with evaluative data. isentered into a data base.

Figure 1 shows the states wheretraining has taken place in the first twoyears and the number of professionalstrained in each state. With the assis-tance of the New Mexico Developmen-tal Disabilities Planning Council, train-ing was conducted in an eleventh statein the second year. The map alsoshows the states that have committedto training in the third and final year ofthe project. Training has alreadyoccurred in Iowa. Because of the sizeof thr: state. two trainings will be heldin California.

The purposes of the ECHO trainingand dissemination are to:

increase the ability of criminal jus-tice personnel to recognize thecharacteristics of individuals withmild retardation or learning dis-abilities:increase the ability of criminal jus-tice personnel to differentiatebetween individuals with mildretardation, those with learningdisabilities, and those with seriousmental illnesses:improve the ability of rank and filecriminal justice personnel to inter-act effectively with and manageindividuals with disabilitie:,: andincrease the referrals of those withsuspected disabilities to programswithin the corrections system andto community agencies uponrelease.

-FindingsThe evaluation questions upon

which ECHO Project data are beinggathered are:

USERS News In Print

ECHO Training Sessions

Evaluation Question 1:Did the activities occur as proposed?

Evaluation Question 2:How many central office/leadershippersonnel were trained by the projectstaff each year?

Evaluation Question 3:How many trainers were trained in theuse of ECHO training modules duringeach year of the project in eachparticipating site

Evaluation Question 4:How many criminal justice personnelwere trained by the trainers each yearat each participating site?

Evaluation Question 5:Was the training provided to the sitecentral office/administrative personneleffective?

Evaluation Question 6:How effective was the trainingprovided to the trainers at each site?

Evaluation Question 7To what extent did the trainingprovided to criminal justice personnelat each site affect the identification ofindividuals with disabilities?

Evaluation Question 8:To what extent did the trainingprovided to criminal justice personnelaffect their interactions withindividuals with disabilities?

At each training session held by theauthors, all participants arc asked toevaluate the materials and the presenta-tions. To put evaluation of the sessionsand the materials in better perspective.it should be noted that the evaluators

8

are, for the most part. from paramili-tary organizations, have no backgroundin disabilities. are resistive, sometimesalmost hostile, at the beginning of thetraining sessions, but are enthusiasticsupporters by the end of the fourth day.While attitudes are always difficult tochange, preliminary data indicate thetraining sessions have been effective.

The training has been "Fly success-ful and very productive from an educa-tion standpoint. An additional benefitis that the training has also been instru-mental in initiating and fostering net-working between the criminal justiceagencies and community agenciesserving those with disabilities. TheECHO training sessions have beenattended by individuals from a widevariety of disciplines in criminal jus-

Winter 1993 7

USERS News In Print

tice. all of whom are eager to interactwith other professionals to alleviatecommon areas of concern. Professionsrepresented at sessions held to datehave included the following:

corrections officerscorrectional educatorslaw enforcement officerscorrectional counselorssheriffs' deputiessocial workersprobation officerspsychologistsyouth counselorscorrections nursespolice psychologistshostage negotiatorscase managerscriminal justice

This networking has given rise tothe beginning of programs to transitionindividuals with disabilities successful -iv morn prison to communities.

Evaluation questions 7 and 8 askwhether line staff trained have actuallyimproved their interactions withoffenders with disabilities and whetherthey have begun to identify and refer.Questionnaires developed by the pro-ject relating to evaluation questions 7and 8 have been shared with thosealready trained. Because it takes fromsix to twelve months' advance noticefor the trainers to schedule their ses-sions in the training academies, no dataon these critical questions have yetbeen received, but data are expectedsometime this year.

One comment voiced by profession-als in the developmental disabilitiesfield is that the materials sometimesdeviate from currently used "personfirst" terminology. This is valid, sincethe materials were developed prior tothe adoption of person first terminolo-gy as the standard.

Conclusions andRecommendations

Leadership personnel in lawenforcement, corrections, divisions foryouth. and probation are very receptive

8 11 inter 199$

and even anxious to receive informa-tion on how to identify offenders withmild retardation and learning disabili-ties. The Effectively Communicatingwith Handicapped Offenders (ECHO)materials and training have been verywell received in the eleven states inwhich training has taken place. Itremains to be seen to what degree linestaff will act on their training andincrease their identification and referralof those offenders suspected of havingdisabilities. It is clear that prior to theECHO training in the 11 states, therewas little or no identification of peoplewho are mildly retarded or learningdisabled in corrections, law enforce-ment (including the courts). or proba-tion and parole. Thus, appropriate edu-cation programs were minimal ornonexistent. There was little transition-al planning for post release to the com-munities. and few community serviceagencies were involved with theoffender after release.

These situations can improve only ifthe offender with disabilities is identi-fied early and at every stage in thecriminal justice system. The ECHOtraining and dissemination project willhave made this possible in 15 states bythe end of 1993. More education onmild retardation and learning disabili-ties is needed at every level of thecriminal justice system. Human serviceagencies must be encouraged to pro-vide service to,this population and toassist corrections. the courts, probation.and parole in transitioning individualsinto meaningful community educationand vocational pursuits. Appropriateeducational and vocational trainingprogram: must be established in cor-rectional settings. Of course. targetingyouth with disabilities who are at riskof becoming offenders while they arcstill in school could deter many fromentering the criminal justice system inthe first place. At $25,000 to $30.000per year to support a person in incar-ceration. and $100.000 to build a cell, itwould seem fiscally and socially soundto expand these pursuits. i

NOTES

From the U.S. Department of Justice. collected froma National Jail Inmate Survey and the National PrisonerStatistic Reporting System. in cooperation with.theFederal Bureau of Prisons.

Two terms commonly used in criminal Justicesystems are "training.- to describe education, and"management.- to describe interactions with inmates

ReferencesBrown, B. & Courtless, T. (1971).

National Institute of Mental Health. TheMentally Retarded Offender. DHEW Publi-cation No. EHSM] 72-9039. Washington,DC: USGPO

1992. July. National Update. Vol. 11. No.1. NCJ-137059. Washington. DC: Bureauof Justice Statistics.

Curry, K. & Kraska, S. (1991). Train-ing Staff to Manage Inmates with Disabili-ties. Paper presented at the meeting of theEighth Annual Correctional Symposium:The Changing Offender. Lexington, KY.

Hockenberry, C. (1980). Education ofadjudicated handicapped youth: Policyissues and implications. Reston. VA: Coun-cil for Exceptional Children. ERIC Clearing-house on Handicapped -Ind Gifted Children.

Maguire, K. & Flanagan, T. (Eds.).(1991). Department of Justice, Bureau ofJustice Statistics. Sourcehook of CriminalJustice Statistics 1990. Washington. DC:USGPO, 1991.

Murphy. D. (1986). The link betweenlearning disabilities and juvenile delinquen-cy: Current theory and knowledge. Wash-ington. DC: National Criminal Justice Refer-ence Service.

Rockowi:?.. R. (1985). Monroe County.New York. Comprehensive DemonstrationProject. Presentation of the UP Symposium.Omaha, NE.

Rutherford. R.B., Jr., Nelson, C.M. &Wolford, B.I. (1985) Special education inthe most restricti to environment: Correc-tional special education. Journal of SpecialEducation. 19.59-71.

Ryan, T. (1983). Prevention and controlof juvenile delinquency. Journal for l °ra-tional Special Needs Education. 5.5-12.

Smykla, J. & Willis, T. (19811. The fre-quency of learning disability: A comparisonbetween juvenile delinquent and seventhgrade populations. Journal of CorrectionalEducation. 32.29-33.

Preparation of Families forIncidental Teaching and Advocacy

for Their Children with Autism

Gail G. McGee

Heidi A. Jacobs

Melanie C. Regnier

Emory UniversitySchool. of Medicine

An incidental teaching" familyprogram was developed to inten-

sify preschool intervention for youngchildren with autism, and to eh-ourageearly empowerment for their parents.Incidental teaching procedures consistof systematic instruction that is provid-ed in the context of naturally-occurringactivities, and the young recipientsplay a central role in uetermining thetiming. context. and topics of instruc-tion (McGee. Daly, & Jacobs. l992).Benefits of incidental teaching includethe development of skills that are use-ful and used in children's daily lives.An important advantage of incidentalteaching is that parents may be pre-pared to blend intensive interventioninto their naturally-occurring homeroutines.

However, family supports must gobeyond preparation of parents for inci-dental teaching. We propose that fami-ly supports may he the most effective

when conceptualized from an inciden-tal teaching perspective. Thus, parentsmay he most responsive when they aregiven a broad array of options forpreparation to help their child reach his

or her potential. When parents candetermine the scheduling. setting. and

3EST CIPY AVAILABLE i 0

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focus of their family program. they candesign an individualized program that

tailored to their unique family needs.Recent developments in early inter-

\ ention for children with autism areielding dramatically positive out-

comes (Lovaas. 1987; Strain. 1987).

Winter /993 9

USERS News In Print

Moreover, it has been well-document-ed that parents can play a crucial roleas intervention agents for their childrenwith autism (McClannahan, Krantz, &McGee. 1982: Schreibman & Britten.1984). With lifelong community inte-gration becoming a realistic goal forchildren with autism. their parents canensure that intensive interventionbegins at an early age.

Concurrent with treatment advances,a nationwide parent advocacy move-ment has radically altered conceptual-izations of supports needed by parentsof children with disabilities. Federallegislation such as the Education of theHandicapped Act Amendments of1986 (P.L. 99-457). now entitled theIndividuals with Disabilities EducationAct. has formalized the role of parentsas meaningful participants in planningtheir child's treatment. This newopportunity for impact is best realizedwhen parents arc informed. In sum.true parent empowerment becomespossible when parents are preparedwith knowledge, skills, and C-ie confi-dence that comes from having knowl-edge and skills (Ziegler. 1990). Anincidental teaching approach is

grounded in the assumption that par-ents will be the most effective in pro-viding and advocating for children'streatments that are compatible withtheir self-identified needs (Dunst. Leet,& Trivette. 1988.

There are two primary goals of theIncidental Teaching Family Program,originally funded in 1990-91 by theU.S. Department of Education'sNational Institute on Disability andRehabilitation Research. First, effec-tive parent preparation is viewed ascrucial in pushing back the age atwhich intensive intervention for chil-dren Ix autism may begin. recogniz-ing that age of intervention may be aprincipal determinant of positive out-comes for these children. An equallyimportant goal is to expedite the earli-est possible empowerment preparationfor pareilis of children with auti,,mbecause of the importance of parental

10 it inter /993

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decisions while their children areyoung.

Description of the IncidentalTeaching Family Program

Parents choose from a range ofoptions to develop a program that willbest prepare them to teach and advo-cate for their child. Throughout. thereis an emphasis on blending interven-tion naturally into family life. and onpromoting children's inclusion in thecommunity. Format options include:(a) an intensive (weekly) individual-ized program: (b) ongoing (monthly)consultation: and, (c) a parent informa-tion seminar.

Intensive IndividualizedPrograms

Parents meet weekly with a trainedFamily Liaison at their home, in a clin-ic (well-stocked with toys and anobservation booth). or at their child'spreschool. Individualized programsbegin with parents' selection of topicsfrom a menu of 47 modules. Eachmodule is accompanied by writtenmaterials, which have been edited b.

1

parents to be "parent-friendly." that is.free of jargon. Where applicable, refer-ence materials and videotapedvignettes are included in the modules.The modules are grouped into five cat-egories: Incidental Teaching. Advoca-cy. General Information. FamilyIssues, and Other Instructional Pack-ages.

Incidental teaching. These modulesare designed to enable parents to teachlanguage and social skills without dis-rupting their daily home routines. Par-ents learn how to identify and use"teachable moments" that occur in thecontext of ordinary home activities.Examples of the daily routines that par-ents have chosen to use for teachinginclude: Mealtimes. Bathtime, OutsidePlay. Dressing, Chores. Car Trips, andPlay with Neighborhood Children.

Advocacy. The advocacy modulesprovide parents with the knowledgeneeded to make informed decisionsregarding their child. Included on themenu is information on: Integration.Federal and State Laws. ProfessionalJargon. Best Practices. Positive Nego-tiations with Systems, and Evaluationof Future Classrooms.

Menu ofFamily Options

Incidental Teaching ModulesIntroduction to Incidental Teach-ingIncidental Teaching of Language

(9 home activities)Incidental Teaching of SocialSkills (8 home activities)

Advocacy ModulesIntegrationKnowing the LawsJargon and Methods Used by

ProfessionalsServices Available and Stare of

the Art Technology

General Information ModulesAutismTypical Child DevelopmentSecuring ResourcesBalancing Parenting andPersonal Time

Family Issues ModulesGrandparentsSiblingsResources within the FamilySpecial Requests

Other Instructional PackagesIndependent Playskills(2 home activities)

Engagement: Keeping YourChild Busy at Home

Toileting IssuesDressing and Self CareMeal Time IssuesBedtime IssuesRoutinesGood Behavior in PublicBehavior Management

General information. Parents needto develop a solid understanding oftheir child's disability. and manyrequest assistance in improving thequality of their family life. Modulesare available in areas such as Autism.Balancing Personal and ParentingTime (Hall. 1987). and Sibling Issues.Grandparents are often interested inobtaining more information on theirgrandchild's disability, and they and

other family members can be instru-mental in sypporting parents' interven-tion efforts. For example. grandparentshave learned to do incidental teachingof "cute' conversational skills, siblingshave been prepared as peer tutors dur-ing reciprocal play activities, and auntshave provided invaluable assistancewith toilet training.

Other instructional packages.These modules, based on proceduresdeveloped and demonstrated effectivein the literature, offer parents help inpromoting their child's inclusion in thecommunity. Popular options includeHome Schedules (MacDuff. Krantz. &McClannahan. 1992). Remote Report-ing (Krantz. Zalenski. Hall. Fenske, &McClannahan. 1981), and ManagingBehavior on Shopping Trips (Clark.Greene. Macrae. McNees. Davis. &Risley, 1977). Special requests are alsoaccommodated in areas such as train-ing parents as trainers of respite work-ers. therapeutic nannies, or SundaySchool teachers.

Ongoing ConsultationParents may opt for monthly con-

tacts. either in lieu of or as a followupto the intensive program. In followup,parents are able to design and imple-ment new child treatments, but theysometimes desire professional inputand reassurance that their plans aresound. The topics of consultation con-tacts are usually determined by fami-lies at the time of the meeting. Vv henparents are in the process of makingplacement decisions for their child,they may use consultation to helpscreen and evaluate potential class-rooms. or to select and train a class-room aide.

Parent Information SeminarsAs in the other program formats, the

topics and scheduling of group meet-ings are selected by participating par-ents. Seminars consist of didactic pre-sentations. with accompanying writtenhandouts, and videotaped examples orfilms. Additionally. izroup discussion

12

permits parents to share successfulexperiences with one another. Whenapplicable. guest speakers are invitedto provide special expertise (for exam-ple, an attorney may present on Dis-ability Law, or a speech and languagespecialist may address more typicallanguage development).

EvaluationParticipating Families

The families of 13 preschool agechildren with diagnosed autism spec-trum disorders participated in evalua-tion of the initial program. One familywith triplets with autism was allottedthe option of program time for threefamilies. Half of the children weresimultaneously enrolled in a universi-ty-based integrated preschool program(McGee. et al., 1992). Others wereconcurrently receiving minimal ser-vices from their local school districts(i.e.. their participation occurred duringtransitions across programs. and duringsummer months). The children. includ-ing 11 boys and 2 girls, presented awide range of levels of functioning.Their families represented low toupper-miudle socioeconomic house-holds.

Parent ParticipationThe project initially offered up to

four hours of individualized meetingtime per week. over a period of up tofive months. Measured in time ofdirect contact with Family Programstaff, parent participation averaged 38hours per family (with a range of 12 to108 hours across children. Most fami-lies reported investing additional inter-vention time with their child. many ona regular daily basis.

Parents chose to receive two-thirdsof their staff contact time in home vis-its: remaining contacts were distributedacross group meetings and school- orclinic-based sessions. It may be notedthat Family Program staff spentapproximately the same amount oftime available for home visits in travelto and from homes.

Winter /993 //

As may be expected in a parent-choice program. levels of reportedparental satisfaction were high. One areaof feedback, however, was that mostparents (including those with the highestlevels of participation) would have pre-ferred even more hours per week over amore extended period of time.

Child OutcomesThe Vineland Adaptive Behavior

Scales were administered (with parentsas respondents) at the beginning andend of participation in the IntensiveFamily Program. The children showedan average of 1.5 months' growth forev:.ry month of participation. Asshown in Figure 1, 10 of the 13 chil-dren showed progress beyond whatwould normally be expected (progress-ing from 6 to 14 months in a 5-monthperiod). The families of two of thethree children who made more limitedprogress had chosen to participate forlimited hours, and they completedfewer modules.

For 12 of the children, videotapedobservations were also obtained in thehome at the beginning and end of theIntensive Family Program. 1,1 eachassessment, a total of 50 minutes ofobservations were comprised of a snackor family meal, a self-care routine, playwith parents (and siblings, if applica-ble), and independent play. Videotapeswere coded using conservative mea-sures of language and social behaviors.As shown in Figure 2, the children ofparents ,ii:(1l-ad selected preparation inlanguav: instrliction modules showedan aver4e inc, -ase in the distributionof their ye from 11 percentto 16 percent across home activities.Only one family did not choose lan-guage modules, and although this childshowed language gains at school. heshowed decreases in language use athome. Similarly. children in the sixfamilies who selected social modulesincreased their focus on (watching orinteracting with) their parents from anaverage of 10 percent to 15 percent oftime in home activities. Children in thesix families who did not select social

ti inter lgo.

Children's Adaptive Behavior Gains AcrossPeriod of Family Participation.

months

1412 -t

2 3 4 5 6 7 8 9 10 11 12 13

Children

El Months Participated M Months Progressed

Home Videotaped Assessments of ChildrenWhose Parents Selected Language or Social Interventions.

Average Percentage of Intervais

VerOalizatons Focus on Adult

Be,ore Program 11:2 Atter Program

modules showed no change in theirfocus on adults across the programperiod. Changes in levels of engage-

ment were highly variable across chil-

dren, suggesting the need for curricu-

lum adjustments in this area.

Perhaps the best measure of advo-

cacy preparation is evidenced by chil-

dren's placements. Within six months

of program participation, 12 of the 13

children were enrolled in fully integrat-

ed classrooms.

DisseminationA community conference was held

to provide information on autism andthe rights and needs of parents of chil-dren with autism. The target audienceincluded early intervention providers,parents, kindergarten teachers, and spe-cialized professionals: conferenceenrollment was full with 125 attendees.The agenda included nationally-recog-nized guest speakers, a panel of com-munity service providers to discusslocal success with integration, and pre-sentations on the Incidental TeachingFamily Program by project staff.

ReplicationTo date, an additional 15 families

have participated in the Intensive Fam-ily Program, and many more have ben-efited from the Parent InformationSeminar and written program modules.Project staff relocated from the Univer-sity of Massachusetts at Amherst to theEmory Autism Resource Center atEmory University School of Medicine(Atlanta). and the new program isreplicating well.

However, demand for services ishigh in a major metropolitan area. andprogram adjustments have been madeto attempt accommodation of a lengthywaiting list. Currently. there is lessflexibility in scheduling and reducedopportunity for home visits (which arenow monthly. supplemented withweekly clinic visits). The Parent Infor-mation Seminar has increased fromone to two meetings per month, andthese meetings have been opened to thegeneral community. Efforts are contin-uing to determine the most effectivebalance of program quality and com-munity needs.

Conclusions and FutureDirections

An incidental teaching approach tofamily supports enables parents to

maximize their child's overallprogress. By incorporating incidentalteaching into home routines, parentscan provide an intensive part of theirchild's treatment and maintain normalfamily living. By becoming informedadvocates for their children, parentscan contribute proactively to their chil-dren's futures.

In sum, children benefit most whenthere are opportunities for their parentsto initiate the supports they want. Thus,evaluation data demonstrated that chil-dren made greater progress in the areastheir parents chose. Parents are capableof making intelligent and useful choic-es based on their goals for their chil-dren and families.

Importantly, an Incidental TeachingFamily Program provides for parentswho have less time and resources tobecome meaningfully involved in theirchild's treatment. A central position ofthis approach is that parental decisionsare always respected. However, par-ents are also informed that more treat-ment hours at home generally trans-lates to more child progress. Whenprofessionals inform and parents makechoices, the collaboration yields a pro-ductive and flexible family supportpackage.

A limitation of this program is that itis labor-intensive on the part of profes-sional staff. There is a need for contin-ued evaluation of adjustments that willincrease efficiency without sacrificingquality. Additionally. there is a need todevelop professional trainingsequences so that larger numbers offamilies may benefit.

Future directions are also aimed atreaching families when their childrenwith autism are as young as possible.Work has recently begun on adapta-tions of the program to meet the needsof families of toddlers with autism. Bypreparing families to determine howthey can best help their young children.they will be provided with opportuni-

t14

ties to help at the time of greatestimpact. i

ReferencesClark, H.B., Greene, B.F., Macrae,

J.W., McNees, M.P., Davis, J.L., & Ris-ley, T.R. (1977). A parent advice packagefor family shopping trips. (Journal ofApplied Behavior Analysis. 10,) 605-624.

Dunst, C.J., Leet, H.E., & Trivette,C.M. (1988). Family resources, personalwell-being, and early intervention. Journalof Special Education. 22. 108-116.

Hall, L.J., McGee, G.G., & Daly, T.(1990). Integration of families in an inte-grated preschool program. (Manuscriptsubmitted).

Krantz. P.J., Zalenski, S.. Hall, L.J..Fenske. E.C., & McClannahan, L.E.(1981). Teaching complex language toautistic children. Analysis and Interventionin Developmental Disabilities. 1 259-297.

Lovaas, 0.I. (1987). Behavioral treat-ment and normal educational am intellec-tual functioning in young autistic children.Journal of Consulting and Clinical Psy-chology. 55. 3-9.

MacDuff, G.S., Krantz, P.J., &McClannahan, L.E. (1992. in press).Achieving independence from trainers'prompts: Teaching youth with autism touse photographic activity schedules. Jour-nal of Applied Behavior Analysis.

McClannahan, L., Krantz, P., &McGee, G. (1982). Parents as therapists forautistic children: A model for effective par-ent training. Analysis and Intervention inDevelopmental Disabilities. 2. 223-252.

McGee, G.G., Daly, T., & Jacobs, H.A.(1992. in press). The Walden Preschool. InS.L. Harris & J.S. Handleman (Eds.).Preschool education programs for childrenwith autism. Austin, Texas: Pro-Ed.

Schreibman, L., & Britten. K.R.(1984). Training parents as therapists forautistic children: Rationale, techniques andresults. In W.P. Christian. G.T. Hannah. &T.G. Glann (Eds.) Programming effectivehuman services. New York: PergamonPress.

Strain, P.S. ( 1987). Comprehensiveevaluation of young autistic children. Top-ics in Early Childhood Special Education.7.97-110.

Ziegler, M. (1990). Parents empoweredas partners. Address presented at the Uni-versity of Connecticut Health Services EarlyIntervention Conference. Cromwell. CT.

tt'inter 1993 13

USERS Nevis In Print

Serving the Needsof Children with AIDS

and Their Families

0

a

Geneva Woodruff, Ph.D.

Executive Director

The Foundation ForChildren With AIDS

14 VI, inter 19Y.'

"When I found out my baby wasHIV-positive. and that it was me whogave it to her, it felt like the wholeworld was crashing down on me. Iwas so scared and ashamed to tellan

"I didn't know what people wouldthink or how they would act. I decid-ed to keep my baby at home... Iwanted to protect her."

"When my family found out. theywouldn't come to visit or even talk tomc."

Comments of mothers of HIV-infected children

7,77 COPY AVAILABLE

Fr he National Commission on AIDS,1 in its first report to the Preside-0.

stated: "As a society. s e claim to p.o-tect and cherish our children but. infact, we have placed women and chil-dren squarely in front of an onrushingHIV epidemic."

Unfortunately, those words haveproven to be all too true. Women andchildren are now the fastest growingsegments of the HIV population. Everyday, six children are born HIV infectedin this country. That is 42 children a

weekenough to fill six infant class-rooms. Since all of these children areborn to families in which, at minimum.the mother is infected and, in manyinstances the father and another childas well. AIDS. in the truest sense, is afamily disease.

This fact separates pediatric AIDSfrom all other childhood diseases andhas enormous implications for thehealth and social service systems.Never before have we been confrontedwith serving an entire family that is ter-minal and among the most marginaland disenfranchised members of oursociety. To understand the extent oftheir disenfranchisement. one onlyneeds to examine the profile of HIV-infected children and their families inAmerica:

The majority are poor and live inurban settings. These are commu-nities characterized by high levelsof poverty, high infant mortalityrates, substandard housing, limitedaccess to transportation, and ashortage of adequate health, devel-opmental. and social services.

The majority of mothers infectedwith HIV have either been a part-ner of a substance abuser or have ahistory of substance abuse them-selves. This not only compromisestheir health and the health of thechild but also makes women reluc-tant to seek medical and drugtreatment for fear of losing theirchildren to child and protectiveservices.

More than 80 percent are fromminority backgrounds and havebeen subject to racism and dis-crimination.

Most of the mothers are singleparents. with limited job skills.education, and financial resources.

And finally. all of these familiessuffer from the negative stigmathat is attached to being HIVinfected.

As a society, we have yet to addresseffectively the issues of poverty. sub-stance abuse. and racism. It is no won-der that, when all these issues existwithin a family with AIDS, the result isan immobilized social service systemand a family that is woefully under-served or inappropriately served.

Even when services are directed tochildren and families affected byAIDS, they are often misdirected. Forexample, the main focus for fundingfor the treatment and care of childrenwith HIV/AIDS has been to hospital-based programs for extremely sickinfants, and to residential homes forabandoned "AIDS orphans."

The impetus for this funding focus isbased on two widely held misconcep-tions about children wiin HIV infec-tion, both of which have been fosteredby widespread and compelling mediastories.

First, there is the misconception thatthe majority of children with HIVinfection are very ill and have a shortlife span. The fact is, more than half ofthese children will live well into theirschool age years. In a recent study thatfollowed 1.000 HIV-infected children,the median age was nine years.

The second misconception is thatmost of the children with HIV areabandoned by their families and left towaste away in hospitals. The fact isthat the majority of children with HIVinfection live at home and are cared forby their families or extended families.True, some have been placed in fostercare because their family memberswere not physically or emotionallyable to care for them, but many havebeen placed because their families hadlimited financial and social resourcesand there were no community-basedchild and family AIDS service pro-grams available to support them and tohelp them care for the child at home.

What Do Families Need?Given these realities and the com-

plex profile of children and familiesliving with HIV disease, the question

16

then becomes: How do we mobilizethe health and social service systems tohelp children and families affected byHIV and/or AIDS?

The first step in answering the ques-tion is to identify those services that chil-dren and families need to enable them tosustain their health and stability so thatthey can remain together as a family.

The service needs most often identi-fied by the families who have soughthelp from the Foundation for ChildrenWith AIDS during the past seven yearsinclude:

coordination of medical care forboth parents and children;help in finding housing, fuel.clothing, and other survival basics:

a therapeutic day and respiteprogram for the children, whichnot only provides the parents,many of whom are symptomatic,with a break from the daily stressof child care but also provides thechild with opportunities to learnand play with other children andhave normal childhoodexperiences;

referral for drug treatment andongoing recovery support (80percent of the parents in ourprogram have a history ofsubstance abuse);

home and center based earlychildhood intervention services toaddress the child's developmentalneeds (90 percent of HIV-infectedchildren have some form ofdevelopmental delay);nutrition counseling andeducation;

parent education and peer groupsupport;therapeutic services, such asindividual, marital, death andbereavement counseling:

home health and homemakersupport. including a home visitingnurse, a home health aide, or ahomemaker to help with chores:

hospiceat home as well as at afamily residential program forboth the infected parent and thechild:

Winter /993 /5

specialized foster care for the chil-dren when the biological family isunable to care for them;

legal assistance with wills. adop-tion, guardianship. and other cus-tody issues for both infected andhealthy children in the event thatfamily members become incapaci-tated or the children becomeorphaned;advocacy and assistance in negoti-ating the health and social servicesystem is one of the most impor-tant services because it is throughthe families' ability to identify andaccess services that they will beable to meet their needs.

What Do Families Want?In addition to examining what these

families need, it is even more impor-tant for service providers to know whatfamilies want in the way of care, assis-tance. and support. In 1988. a nationalmeeting for HIV affected families fromacross the country was sponsored bythe Maternal Child Health Bureau ofthe U.S. Department of Public Healthin Washington. D.C., in cooperationwith the Association for the Care ofChildren's Health. The purpose of themeeting was for government officialsand professionals to hear directly fromfamilies what services they were, orwere not, receiving and which of theseservices they found to be the mosthelpful in coping with their disease.The parents reported that:

Services were the most helpfulwhen they were both comprehen-sive and coordinated. The avail-ability of support from a singleidentified person was mentionedby several of the families (bothfoster and birth parents) as the onefactor. more than any other, thatenabled them to keep their chil-dren with HIV infection at home.

Services that were the least helpfulwere those that were provided in apiecemeal fashion and required thefamilies to be responsible forlocating and coordinating

16 Hurter NY."

those services. Such lack of coor-dinated services was the most fre-quently voiced complaint by thefamilies. If families had to findand coordinate service from vari-ous providers without assistancefrom someone who "knew the sys-tem." the families reported thatthey felt angry, stressed, and over-whelmed.Families who were in supportgroups with other families of chil-dren with HIV infection felt thisactivity to be a primary support.Through participation in suchgroups. these families were able todevelop supportive relationshipswith other families.

Crucial to their ability to cope wasthe need to remain hopeful.Although the families were fullyaware of the prognosis for theirchildren and themselves. they allexpressed a need to feel hopefuland to know that a feeling of hopewas also shared by the health care.education. and social service per-sonnel serving them.

High on their list was their desirefor understanding from others.They reported that public informa-tion about HIV infection and theattendant fear had devastatingrepercussion.; for them and theirchildren and had resulted in jobloss, ostracism in the community.and being treated with fear andsuspicion by service providers.

Programming That MeetsFamilies' Needs

in the past seven years in our workwith children and families affected byHIV and/or AIDS, our goal has been tosupport families and to help them sus-tain their health and stability so thatthey can continue to care for their chil-dren at home.

In response to the needs familieshave expressed for services. v; e havedeveloped a model program. ProjectSTAR. that is confidential and safe forfamilies. addresses their psychosocial,financial, and health needs, and sup-

ports them to experience the best quali-ty of life for as long as possible.

Project STAR is a home and centerbased child and family care programserving 46 children and their 150 fami-ly members in the Greater Boston area.In 1992. STAR was cited by the Sur-geon General as an exemplary pro-gram, a program to be replicated incommunities throughout the nation.

As we learned from our experiencewith STAR, to be effective, a programfor children with HIV infection andtheir families should have the following characteristics: it should he familycentered, community based, compre-hensive, both home and center based.and it should coordinate servicesacross those agencies that are servingthe family.

Family Centered andCommunity Based Services

By family centered. we mean thatservice providers should recognize thefamily as the child's primary care giverand empower that family to direct thecare provided to the child and to fami-ly members. It is important to recog-nize that care of the child in the homeby the family is the most cost effectiveservice option.

Compare the co.ts: caring for a childin foster care is approximately S25.0(X)per year: for residential care it is

S85.000 per year; caring for thatchild in a hospital is approximatelyS287.000 a year. By providing familycentered and community based care.we keep the child at home ionger andaddress the needs of the entire family.preventing or delaying the child'splacement in foster care. group care. orextended hospitalization. The cost toprovide the comprehensive array ofservices available to families at Pro-ject STAR is approximately S12,000per year.

Comprehensive ServicesMedical management of HIV dis-

ease is only one aspect in the properand effective care of the child with

USERS News in Print

HIV and/or AIDS. Families living inhigh risk communities also facetremendous stress due to social andeconomic factors: stresses that are fur-ther compounded by the psychologicalimpact of the disease.

For the children at Project STAR.there are a variety of stressors. All ofthe children live in a home where themothers are single parents and heads ofhousehold. Two of the weserve share their home with other fami-lies just to help pay the rent. Many ofthe mothers are struggling with denialof their or their child's illness. andfeelings of guilt and remorse, and lone-liness and isolation because of theircondition.

Additionally, all of the families weserve deal with the daily stress of wit-nessing either their own or their child'sdebilitating disease. Some of the med-ical problems the children experienceare seizures. respiratory problems.asthma, sinusitis, rashes, thrush, infec-tious pneumonia, tuberculosis, bacteri-al infections, diarrhea, speech delay.chronic colds and low grade fevers,growth delays, and cognitive andmotor regressions.

In combination, these stressors placethe HIV-infected family in a state ofconstant turmoil, ongoing crises, withintermittent periods of despair. Pro-grams serving these families must rec-ognize the complex nature of theirlives and be organized to respond totheir specific needs. They must providea range of services that address themedical. developmental, financial, andpsychosocial needs of the children andtheir families. This comprehensiveapproach improves the families' abilityto cope with the disease and to manageany problems and crises that arise.

In addition, programs must addressthe service needs of the entire family.which includes the child, the mother.the infected and healthy siblings, aswell as any other family members orsignificant others.

Home and Center BasedServices

In providing comprehensive care tofamilies, both home and center basedservices are needed. By providing ther-apeutic intervention in a center, thedevelopmental needs of the childrenand the psychosocial needs of theircare givers can be simultaneouslyaddressed. Quality therapeutic inter-vention by a clinical staff, such asoccupational. speech. and physicaltherapists, and child development spe-cialists. is an important need shared byall families.

Day care also offers parents the timeto go to their medical and drug treat-ment appointments, to spend time withtheir other children, and to attend toroutine household demands. Almost allof our families come to us needing dayrespite services. Some of our mothers,especially during bouts of illness, arein need of day and overnight respitecare for their children.

Because of the fluctuating conditionof family members infected with HIV.service providers must be prepared todeliver their services in the home, or insome cases. in the hospital or atfriends' or family members' homes.when the mother and child become ill.Even in those cases where the childand the family are healthy. it is impor-tant for services providers to go intothe families' homes. In doing so, ser-vice providers acquire a realisticunderstanding of where and how fami-lies live, and are better able to compre-hend and address the stressors familymembers face in their day-to-day lives.Home based service also offers the par-ent some exclusive one-on-one timewith service providers.

Coordinated Services AcrossAgencies

Because it is not possible for oneagency or program to provide all theservices required by families with HIV,referral to other agencies and coordina-tion of these services is an essential

18

component of Project STAR. Most ofthe families we see are involved withat least five outside agencies and careproviders. It is not uncommon for eachof these agencies to have different poli-cies, procedures, and requirements. andtheir own schedule of appointments forthe families to meet.

For someone who is able bodied.juggling the demands and expectationsof these various agencies can be trying.For a single parent who is ill and car-ing for an ill child, the process can beoverwhelming. It is important that theservices be offered in a continuum ofsupport that enables the family to movefrom one service option to another.The structure we have used for achiev-ing this coordination across agenciesand professionals is the transagency/transdisciplinary model, which orga-nizes a group of providers into an inte-grated network that can be easilyaccessed by the family. Also, it is vitalthat the family have access to a singleprofessional within the network whoserves as the advocate for the familyand assists them in accessing all neces-sary services.

Community Based ServicesPrograms and services need to be

located within the community wherethe families live. They must also beaccessible both physically and cultural-ly, and reflect a sensitivity to the racial,ethnic, cultural, and socioeconomicbackgrounds found therein.

It is also helpful for these programsto be housed in a building that isshared cooperatively with other pro-grams for women and children. Forsome families, a program in a facilityidentified as exclusively serving chil-dren and families with HIV /AIDSwould be too conspicuous and mightprevent them from utilizing the pro-gram.

It is essential that the staff in theseprograms be empathic and feel com-fortable about working with HIV-infected children and their familieswho may have a history of substance

Winter /993 17

USERS News In Print

abuse. Staff must also have the skillsand experience to work with high riskfamilies who have complex and multi-ple service needs.

The Need for Safety andConfidentiality

The negative stigma attached toAIDS very often frightens and isolatesmothers of children with HIV infec-tion. As a result, they are often reluc-tant to seek support and treatment forfear of the negative consequences theywill encounter once they disclose theirstatus. This is especially true of moth-ers who are ill themselves and have ahistory of drug use. Many women findout they have HIV at the same timethey learn that their child is infected.This "double shock" often incapaci-tates them.

It is at this crucial time in the livesof children and their families that par-ents have need for a program in whichthey can orient themselves to life withthe disease, stabilize their emotionalstates, access developmental servicesfor the child, receive counseling, andgain support from other families whoare struggling with HIV/AIDS. Even-tually, with this kind of support. fami-lies will become more comfortableabout disclosing their HIV status andcan seek support from other programs.

For many in the field, these special-ized services stand in stark contrast tothe prevailing orientation toward main-streaming for all children with specialneeds. In the face of this concern, theultimate question becomes: Without

/8 tt niter 1914.

such specialized programs. which aredesigned and committed to providingcomprehensive and intensive servicesto children and families with HIVinfection, could these families obtainservices and care through most main-stream programs?

At the present. we believe theanswer is no. Traditional programsHead Start, day care, early interventionprograms, preschool. and otherswereneither designed nor staffed to dealwith families with AIDS, nor toaddress the issues of substance abuseor terminal illness.

In addition, there is evidence to sug-gest that many of the professionals inthese programs are reluctant and, insome cases, unwilling to work withchildren and families who are HIVinfected. In the March/April issue of"Children With AIDS" newsletter.there was an article citing three recent-ly released studies that surveyed theattitudes of special educators, elemen-tary school teachers, and day careproviders regarding their feelingsabout having HIV- infected children intheir classrooms. and their right toknow which children in their class-rooms were infected. The studiesshowed that a majority of those sur-veyed had strong feelings about theright to know about HIV-infected chil-dren in classrooms: and, if given achoice, wouldn't want to teach them.

As a veteran in the fields of childdevelopment and special education.I've been a staunch advocate for, anddefender of, the concept of main-

streaming for all children with specialneeds.

However. for many of the familiesliving with HIV, especially those inwhich an infected caregiver has anewly diagnosed child, many main-stream programs may not be available.In fact, many families might choose tohave no services at all rather than hav-ing their HIV status known in the com-munity.

If our goal is to keep familiestogether, to help them physically andemotionally to live the best quality oflife, then programs such as ProjectSTAR have a valid place in the servicecontinuum. We emphasize that the roleof the segregated program is transition-al in nature. These programs should hedesigned to serve as a haven for par-ents and children, a place where theycan find the support and confidence tomove into the mainstream when theirchildren are of preschool or school age.

If these programs do not exist, manyfamilies caught in the crisis of theirAIDS diagnosis will fail to seek ser-vices and support. Many families willbe overwhelmed and place their chil-dren in foster or residential care at sub-stantially greater costs to society.Though we must support intensive pro-fessional education and training forstaff in mainstream programs servingHIV-infected children, we must notignore the importance of transitionalprograms for those more vulnerablechildren and families who are in des-perate need of quality comprehensivecare. i

OSERS News In Print

Serving Students with Emotionaland Behavoral Disordersthrough a Comprehensive

Community-Based Approach

Michael H. EpsteinNorthern Illinois University

Kevin QuinnEducational Researchand Services Center

C. Michael NelsonUniversity of Kentucky

Lewis PolsgroveIndiana University

Carla CumbladEducational Researchand Services Center

D ecent reports on the low levels of1.\success in educational programsfor students with emotional and behav-ioral disorders (EBD). the limitedavailability of related services, and alack of collaborative. interagency prac-tices indicate an urgent need to recon-sider how school and community ser-vices are provided to these studentsand their families. To serve this popu-lation effectively, school districts andcommunities need to develop andimplement comprehensive, communi-ty-based systems of services and sup-port. Addressed in this paper are the mdk

1-

=i14.$1,,,r

" 1;14; *I-

'V"4 ,114

Winter 1993 19

° BEST COPY AVAILABLE

issues and strategies involved in devel-oping these integrated services. Thepurpose of this paper is to prow'.: ec'u-cators and community stakeholderwith information and resources to helpthem begin programs in local commu-nities. First, the need to develop com-prehensive, community-based pro-grams is established through a reviewof data regarding the prevalence ofmental health problems among chil-dren and youth and the financial costsof traditional methods of serving thesestudents. Then, the issues that areessential to developing a comprehen-sive. community-based approach toserving students with emotional andbehavioral disorders are presented.

Need for ComprehensiveCommunity-Based Services

Emotional or behavior disorders(EBD) present families and communi-ties with significant social and finan-cial challenges. Recent governmentreports and other professional literatureindicate how our social institutions areaffected by problems related to theseyoungsters and families. Althoughsuch reports typically understate thefull nature of the problem. theynonetheless suggest the enormoushuman and financial costs of providingtraditional, restrictive services to thispopulation. They also strongly suggestthe need for providers of care to theseyoungsters and families to examine themanner in which services are provided.

Prevalence of Behavior /EmotionalDisorders

A consistent trend in the prevalenceof children's mental health problemshas emerged over the past 20 years.The Office of Technology Assessment(1986) reviewed existing research andconcluded that 11.8 percent or 7.5 mil-lion children and adolescents were inneed of mental health services. In edu-cation, the number of students receiv-ing services for EBD in the publicschools has risen over the years. In1978. the prevalence of students identi-

20 It inter 1993

fied as EBD was 0.5 percent: morerecent figures estimate the prevalenceof students identified as EBD atapproximately 1 percent.

Estimates of Restrictive EducationalPlacements

In 1990. students with EBD wereeducated in self-contained specialclasses (35.8 percent), separate schools(13.4 percent), residential facilities (3.8percent). and homebound/hospitalplacements (2.9 percent) at rates muchhigher than students with other disabil-ities. For example, although studentswith EBD comprise only 9 percent ofall students in special education, theyrepresent more than 50 percent of allstudents served in residential facilities(U.S. Department of Education. 1991).

Estimates of Out-of-Home Placements

In 1989. nearly one-half millionchildren were estimated to be in out-of-home placements (Select Committeeon Children, Youth, and Families.1989). Out-of-home placements typi-cally used to serve students with EBDinclude foster care. hospital, and resi-dential facilities, and correctional set-tings. Foster care. the most widely usedout-of-home placement. served morethan 340.000 children in 1988 (Tuma.1989). More than one-half of the chil-dren and youth in long-term foster careare in need of mental health services.but less than 15 percent receive ade-quate services (Tuma. 1989). Eachyear a significant number of childrenand youth are also admitted to mentalhealth facilities. In 1986, approximate-ly 55.000 children were in residentialmental health care and recent evidencesuggests that many of these individualswere being placed in psychiatric hospi-tals unnecessarily (Behar, 1990). In1987. more than 91,000 adolescentswere held in public and private juve-nile correctional facilities, a 40 percentincrease from the decade earlier (SelectCommittee on Children. Youth, andFamily. 1989).

21

Estimates of Financial Costs

The manner in which education.mental health, and other agencies cur-rently serve children and youth withEBD results in extensive financialcosts. In 1985. mental health servicesfor children 14 and under were estimat-ed at 1.5 billion (Institute of Medicine.1989). One billion dollars are presentlybeing spent each year for the hospital-ization and residential treatment ofchildren (Yelton. 1991). In 1986. pub-lic juvenile correction facilities coststate and local governments nearly 1.5billion dollars to operate. Perhaps oneof the most obvious indicators of theneed to provide community-based pro-grams is the cost of out-of-communitycare. A recent survey of 37 statesreported that more than 4,000 youthwere placed out of their home state at acost of 5204.000,000 or an average ofover $50,000 per youth, per year (Van-DenBerg, 1989).

Effectiveness of Out-of-CommunityCare

Out-of-community placements pre-sent a number of service related prob-lems (VanDenBerg. 1989). First, thelocal community's ability to monitorstudent progress is severely restrictedby its lack of proximity to the place-ment sites. Second. student progressreports may not always be objectivegiven the substantial financial contin-gencies at stake (e.g.. $200 per day) forthose providing the services. Third,generalization and maintenance oftreatment gains to the home and com-munity usually are not planned. mini-mizing the likelihood that these gainswill persist upon discharge. Fourth,restrictive, out-of-community place-ments limit family participation in thedevelopment and provision of services.This contradicts the current views ofmany mental health and social serviceprofessionals who believe the mostimportant social institution in a child'slife is the family (Friesen & Koroloff.1990).

()SFRS Noss In Print

Summary

The aforementioned data on childrenand youth with EBD suggest that a sig-nificant number of them are experienc-ing mental health, social. and educa-tional problems. These problems arevery costly to the child, the family, andthe community. Although manyschools and communities elect to servethese children and youth in restrictive,out-of-community settings. researchand common sense suggest that this isan ineffective and costly intervention.

Comprehensive Community-Based Services

In this section. issues consideredcritical to developing and implement-ing a comprehensive, community-based service model for children withEBD and their families are presented.This model is a "best practices"approach to providing comprehensive.community-based services to children.youth, and families. Recently, severalinitiatives to meet the multiple andchanging needs of this populationthrough integrated services have beenlaunched on the national, state. andlocal level (Beach ler, 1990: Behar.1985: Burchard. Schaeffer. Harrington.Rogers. Helkowitz. & Tighe, 1991:Jordan & Hernandez. 1990: Nelson &

Pearson, 1991: Stroul, 1985: Van Den-Berg, 1989). Based on these initiatives'innovative features, we believe thatplanners must achieve agreement onthe following issues relative to devel-oping a comprehensive. community-based model of services. These issuesinclude ckveloping a system of care. tar-

get population definition, principles ofcare. comprohensive needs assessment.

care, and evaluation.

A System of Care

A complete. community-based sys-tem care refers to "a comprehensivespectrum of mental health and othernecessary services that are organizedinto a coordinated network to meet themultiple and changing needs of severe-ly emotionally disturbed children andadolescents" (Stroul & Friedman.1986. p. iv). The development of a sys-tem of care. therefore. requires collab-oration and cooperation among profes-sionals from various child care

agencies. Interagency collaborationhas been a primary goal of previousmental health initiatives to serve chil-dren and youth with EBD. A compre-hensive interagency system of caremodel should feature the followingseven function-specific sources of ser-vice: mental health services, social ser-

. `)2

vices, educational services, health ser-vices. vocational services, recreationalservices, and operational services(Stroul & Friedman. 1986).

Successful interagency collaborationinvolves a specifically delineatedarrangement among the primary childcare agencies. This arrangement speaksto vital issues such as agency responsi-bilities. service financing, joint systemplanning. and collaborative program-ming (Duchnowski & Friedman.1990). The details of such arrange-ments should be carefully explicated inwritten joint agreements that are mutu-ally developed and officially approvedby the executive directors of all perti-nent agencies. Written joint agree-ments provide permanent guidelinesthat establish accountability and ensurecontinuity of service regardless of staffturnover.

DefinitionAgreement on a definition of the

specific target population to be servedvia interagency collaboration is anoth-er essential issue affeL:ing the develop-ment of an effective community-basedsystem of care. A population definitionassists cooperating agencies in deter-mining service eligibility criteria, ser-vice provision responsibility, and ser-vice payment responsibility.Developing an operational definitionof the targeted population has been aninitial activity in previous interagencyinitiatives (e.g.. Jordan & Hernandez.1990: Magrab. Young. & Waddell.1985). Because the needs of local com-munities will vary, the definitions oftarget populations will differ fromcommunity to community. For exam-ple. in Ventura County. California, thetarget population of children and youthwho have first priority for servicesthrough the interagency system of careis defined as those with a DSM 111-Rdiagnosis. a severe functional impair-ment in the home, school. and/or com-munity. and a risk of or actual separa-tion from the family (Jordan &Hernandez. 1990).

Winter 1993 21

Principles of Care

A third essential issue is the extentto which policy makers reach agree-ment or. the "principles of care- thatwill establish the direction and purposefor the community-based program.Policy makers should consider impor-tant issues such as goals. accessibility.family involvement, and the compre-hensiveness, individualization. coordi-nation. integration, and evaluation ofservices in the desired system. Theagreed upon principles provide thecontext or climate in which serviceswill be delivered. Community-basedprograms that have been successfulhave developed an agreed upon set ofprinciples (Jordan & Hernandez. 1990;Stroul & Friedman, 1986).

Needs Assessment

To develop a comprehensive, com-munity-based system of care, it is nec-essary to examine the complex anddiverse needs of those targeted for ser-vice and the equally multifaceted needsand resources of service providers andsocial agencies. The overriding objec-tive of a needs assessmeh: is to obtainsufficient information for drawingaccurate conclusions about the currentsystem of care without becominginvolved in a complex, expensiveprocess which, in itself, becomes a bar-rier to system development.

In a model program of services. athree-phase needs assessment shouldbe implemented. First, an archivalreview of children and family previ-ously served should be conducted(Burchard et al., 1991). An archivalanalysis involves a systematic, retro-spective review of select individuals'case records. Second. a survey of directservice providers from the primarychild care agencies should be conduct-ed (Arizona Department of Health,1991: Friedman. 1988). This informa-tion provides data on the current quan-tity and quality of the service currentl,being provided. Third, an interviewshould be conducted with a representa-tive number of children, parents, teach-

' Winter 199?

ers. social workers, mental healthworkers, probation officers, policymakers, and others who have or willprovide services (Arizona Departmentof Health.. 1991; Burchard et al., 1991).Individual interviews should consist ofcarefully chosen open-ended questionsabout the quality and quantity of theservices provided, barriers to services,and strategies for improving these ser-vices. Using these data, representativesfrom the primary child care agenciescan then develop an action plan forimproving the existing system of care.

Individualized Care

Agencies need to totally coi.imit toserving the child and his or her familyon an individualized care basis. Theprinciple of individualized care isbased on the development and evalua-tion of programs such as Kaleidoscope(Burchard & Clarke. 1990), the AlaskaYouth Initiative (VanDenBerg, 1989),and Project Wraparound (Burchard &Clarke. 1990). In individualized care,the child's specific needs rather thanavailability of existing services deter-mine treatment structure (Burchard &Clarke, 1990; Burns & Friedman,1990). Having the latitude to allocatecreatively and adjust resources isessential, however, parents. case man-agers. and program evaluators mustalso be able to ensure that all servicescalled for in the treatment plan areactually provided a., planned. The prin-ciples of individualized care central toa model program of services areunconditional care. intensive casemanagement. family involvement, andcultural competence.

Providing unconditional care meansthat no child will he denied servicesand that each child will receive ser-vices in as normal a community settingas possible until he or she no longerrequires services (Burchard & Clarke.1990). That is, there are no predeter-mined criteria for emotional or behav-ior problems beyond which termina-tion will occur. In intensive case

management, a single case manager isassigned to work with a child and afamily for as long as the services areneeded. Case managers provide for thedevelopment of an overall treatmentplan, broker services essential to meettreatment goals. and monitor treatmentoutcomes, thereby ensuring that inter-vention strategies are adopted tochanging child and family needs. Thepractice of family involvement isfounded on the premise that childrenare best served by the family unit.Family involvement means empower-ing families (e.g., family advocacy andparent rights) and providing direct ser-vices in the home setting (e.g., parenttraining, respite care, or crisis manage-ment). Model programs must also pro-vide culturally competent services.Cultural competence underscores theimportance of culture. the assessmentof cross-cultural relations, vigilanceregarding the dynamics of cultural dif-ferences. expansion of cultural knowl-edge, and modilcations to meet cultur-al needs (Cross. Bazron. Dennis, &Isaccs, 1989).

Commitment to Evaluation

If provided services and desired out-comes are to he satisfactory, thoroughevaluation procedures are essential.Information obtained through theseprocedures allows administrators andservice providers to direct systemdevelopment and growth. documentwhich children and youth respond wellto community-based programming, andmeasure the long-term impact of suchtreatment on the children and familiesserved.

To accomplish these goals, an evalu-ation plan that provides a blend ofquantitative and qualitative data collec-tion instruments should be developed.Evaluation information should focuv onchild, youth. and family needs, serviceoutcomes. and the process and productof the service delivery system. Areas ofevaluation should include child status,family status. interagency collabora-tion, community-based service provi-

2 3

OSERS News in Print

sion, and background information. Alsoof interest are such outcomes aschanges in important target behaviorsand the social validity of these changes.cost effectiveness. range of placements.and the levels of collaboration and sat-isfaction of participating agencies.

Summary

In the 1980s, the mental health needsof the children and youth in our societyw.ere dramatically reported in numerous

publications. In reaction. federal andstate governments, and private founda-tions promoted initiatives to improveservices for children and youth withemotional and behavior disorders.Selected programs at the national, state.

and local levels have identified a set ofbest practices essential to the develop-

ment of a comprehensive, community-based model of services. Local commu-nities wishing to develop this model ofservice delivery need to address theissues of developing a system of care.target population definition, principlesof care. needs assessment. individual-ized care, and evaluation. Collectively,these issues will significantly challengeadvocates, agency administrators.direct service providers, parents. andchildren and adolescents. Nonetheless.the strategies to resolve these issues aravailable to local communities interest-ed in planning, implementing. and eval-uating a comprehensive community-based system of care. i

ReferencesArizona Department of Health Ser-

% ices ( 19911. State of /Arizona children'sbehavioral health services needs andresources assessment. (A.R.S. Section

36-3421 and A.R.S. Section 36-3431-35).Arizona: Author.

Beacbler. M.3. (19901. The mentalhealth services program for youth. TheJournal of Mental Health Administration.17,115-121.

Behar. L. (1985). Changing patterns ofstate responsibility: A case study of NorthCarolina. Journal of Clinical Psychology.14,188-195.

Behar. L. ( 1990). Financing mentalhealth services for children and adoles-cents. Bulletin of the Menninger Clinic. 54.127-139.

Burchard. J.D., & Clarke, R.T.(1990). The role of individualized care in aservice delivery system for children andadolescents with severely maladjustedbehavior. The Journal of Mental HealthAdministration, 17(1). 48-54.

Burchard, Schaefer, M.. Harring-ton, N.. Rogers, J., Welkowitz. J., &Tighe. T. ( 1991). An evaluation of thecommunity integration demonstration pro-ject. (Unpublished manuscript) Universityof Vermont. School of Psychology.

Burrs. B.J.. & Friedman. R.M. (1990).Examining the research base for children'smental health services and policy. TheJournal of Mental Health Administration.17.87-99.

Cross. T.L.. Bazron, B.J., Dennis.K.W.. & Isaacs, M.R. (1989). Towards aculturally competent system of care: .4

monograph on effective services for minor-ity children who are severely emotionallydisturbed. Washington. DC: CASSP Tech-nical Assistance Center.

Duchnowski, & Friedman.(1990). Children's mental health: Chal-lenges for the nineties. The Journal of Men-tal Health Administration. 17(1). 3-12.

Friedman. R. (1988). Strategies forconducting needs assessments based onsystem of care models. In P. Greenbaum.R. Friedman. A. Duchnowski. K. Kutash.& S. Silver (Eds.). Children's mentalhealth services and policy: Building aresearch base. Tampa: Florida MentalHealth Institute.

Friesen. BJ., & Koroloff, N.M. (1990).Family centered services: Implications formental health administration and research.

Journal of Mental Health Administration.17.13-25.

Institute of Medicine (1989). Researchon children and adolescents with mental.behavioral, and developmental disorders:Mobilizing a national initiative. Washing-ton. DC: National Academy Press.

Jordan. D.D., & Hernandez. M.(1990). The Ventura planning model: Aproposal for mental health reform. TheJournal of Mental Health Administration.17. 26-47.

Magrab, P.R., Young, T., & Waddel.A. (1985). A community workbook for:Developing collaborative services for seri-ously emotionally disturbed. Washington.DC: Georgetown University Child Devel-opment Center.

Nelson. C.M., & Pearson, C.A. (19911.Integrating services for children and youthwith emotional and behavioral disorders.Reston. VA: The Council for ExceptionalChildren.

Select Committee on Children. Youth.and Family (1989). Where are our chil-dren. Washington, DC: U.S. GovernmentPrinting Office.

Strout. B. (1985). Child and adolescentservice system program (CASSP) systemchange strategies, a workbook for status.Washington. DC: CASSP Technical Assis-tance Center at Georgetown University.

Stroul, B.A., & Friedman, R.M.(1986). A system of care for seriously emo-tionally disturbed children and youth.Washington. DC: CASSP Technical Assis-tance Center at Georgetown University.

Tuma, J.M. (1989). Mental health ser-vices for children: The state of the art.Amerwan Psychologist. 44.188-199.

U.S. Department of Education (19911.Twelfth annual report to Congress onimplementation of Public Law 94-142.Washington. DC: U.S. Government Print-ing Office.

VanDen Berg, J. ( 1989). The Alaskayouth initiative. Anchorage. kK: Depart-ment of Mental Health.

Yelton. S.W. (1991). Family preserva-tion from a mental health perspective. TheChild. Youth. and Family Services Quarter-ly. 14(31.6-8.

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OSERS Nev.s In Print

Transition Planning for IndividualsWho Are Deaf and Blind:

A Person-CenteredApproach

Phyllis PerlrothCoordinator

TOPS Project. Interwork Institute

Ian Pumpian, Ph.D.Professor

San Diego State University

Shirley HescheTransition SpecialistSweetwater Union High

School District

Colleen CampbellSan Diego State University

Introductionrri he world is changing dramatically

for persons with severe disabilities.Not only has education become aninalienable right but there is also agrowing expectation for each person toparticipate fully in all aspects of schooland community life. We are becomingmore sophisticated in our ability todeliver services and organize resourcesto help more individuals exercise theirfull citizenship. The initiatives and pri-orities of the Office of Special Educa-tion and Rehabilitative Services(OSERS) represent this trend and com-mitment.

24 1i inter 199.;

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111 e 05515.511.11.1.51.0.5.

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OSERS News In Print

Functional curriculum, activity-based lessons, neighborhood schoolplacement. school inclusion. and thetransition from school to work arefamiliar issues associated with bestpractice for students with severe dis-abilities. Concomitantly. educationalpractices and technologies haveimproved in relation to the uniqueneeds of students who are deaf andblind, especially in areas such as com-munication, orientation, and mobilityskills instruction. Many of theseimprovements are occurring in settingsand schools that are in the process ofrestructuring. This article will describethe Transition Occupational Place-ment for Students (TOPS) project.TOPS has been implemented in alarge. diverse urban community. It rep-resents the collective efforts and con-tributions of many agencies and indi-viduals. The TOPS consortium wasorganized by San Diego State Univer-sity Interwork Institute and the Sweet-water Union High School District.TOPS has attempted to involve stu-dents who are deaf and blind as a partof the community's overall effort tobetter meet the needs of all students.TOPS is a demonstration project strug-gling with the issues associated withchange, attitude. budget, disagreement.and technological advances. At thesame time, Sweetwater students whoare deaf and blind are now activemembers of their high schools. Theyare involved in classes, clubs, and jobs.Many nondisabled peers have devel-oped skills to interact effectively withtheir new found friends.

TOPS was designed to restructureservices provided to students who aredeaf and blind. Currently, manyexperts in the areas of deafness andblindness need to develop new com-mitments and competence to supportthis group's ft'l inclusion in schooland community. Many with expertisein supporting school and communityinclusion need to develop skills in pro-viding and coordinating services oftenspecific to the needs of students who

are deaf and blind. Until the gap isreduced in this "specialist-generalist"dilemma, students who are deaf andblind will continue to be underrepre-sented in many new and excitingschool inclusion initiatives. Thisunderrepresentation can be summa-rized by the following.

Best practices as it relates tointegration. functionality, peerrelationships, and transition areoften denied to students who aredeaf and blind.

Conversely, when best.practice isprovided to students who are deafand blind, specializedconsiderations such ascommunication, orientation, andmobility are often neglected. Forexample, techniques for uses ofcalendar boxes, name signs andorienting students to a task, are notgenerally known across educators.

Services for students who are deafand blind are based on a heavyreliance on one-to-one staff tostudent instructional ratio, a ratiowhich is hard to support in schooland virtually impossible to supportin adulthood leading to aconsiderable amount ofnoninstructional "dead time."

Parents of students who are deafand blind, as with other families.range from being very involved toquite uninvolved in their child'seducation. Very involved parentshave often attempted to learnabout deafness and blindness andadvocacy and are sometimesresentful of the school system.Parents who are generallyuninvolved have often not beenactively or effectively solicitedand supported by the schoolsystem.

There have been few activeattempts to secure input and activeinvolvement of siblings and peersbeyond peer tutoring programs.

Few sustained friendships existbetween most students who aredeaf and blind and nondisabledindividuals.

26

Limited transition planning hasresulted in adults, who are deafand blind, leaving school and notparticipating in new supportedemployment and supported livinginitiatives.

Instructional programs andresources should be betterorganized and developed forissues such as staff competence.scheduling, integration, lessonplanning, and data keeping(Kaplan, 1989: Falvey, 1989:Haney, 1988: Perske, 1988).

TOPS was designed to demonstrateservices that produce results and thatchallenge these generalizations. TOPSwas desigi.,:d to ensure that studentswho are deaf and blind are well repre-sented in efforts to improve andrestructure school and community ser-vices. Specifically, the project wasdesigned to:

enhance meaningful integrationin a wider range of school andcommunity environments:

expand the concept of transitionfrom that of school to work to thatof school to adult life:

use person-centered planningstrategies to more actively involveparents. other family members.peers, friends, and co-workers:

better infuse skill instruction intofunctional activities incorporatingsystematic instruction.augmentative communication.calendars. technological devices.and other individualizedadaptations: and

establish more effectiveinstruction and support plans thatimpact on where individuals spendtheir time. what they spend theirtime doing, and with whom theyspend their time.

TOPS has developed. adopted. anddemonstrated many strategies to facili-tate inclusion, person-centered plan-ning, and transition. At the same time.strategies were developed to ensurethat their experiences included atten-tion toward needs often specific to

It inter PAY 25

Paulo has been a student in hisneighborhood high school for thepast year. During his first year,Paulo has had several excitingactivities occur to support hisactive participation in both campusand community experiences. Paulois 18 years old, severely mentallyretarded, and has profound hearingand visual losses. He uses objectcommunication throughout his dayand walks using either a sightedguide or a sighted guide and awalker.

Paulo came to the secondary dis-trict in a wheelchair, unable to walkor tolerate interactions with staff orpeers. A year after coming to thesecondary district, Paulo was usinga walker. At the beginning of hissecond year of high school, Paulo'steacher coordinated a futures plan-ning meeting for him. During themeeting, the following areas wereidentified for development: com-munication (establish name signsfor people in his life), mobility(more independent ambulationwithout the walker), integration(involvement with the wrestlingteam), community (shopping forgroceries), domestic (self-care anddishwashing). By the end of theyear in the high school program,Paulo had participated in a physicaleducation class with same-agepeers, had two jobs (recycling andcafeteria), joined an extracurricularhigh school club (Friday Night

Live) and participated on thewrestling team.

Paulo's school routine has sig-nificantly changed from when hefirst started at the high school lastfall. This year, for the first time, heis engaged in a variety of generaleducation and community activi-ties. Through the facilitation of astudent worker (same-age peer),Paulo is in a general educationadvanced art and reading class.Paulo's main objectives in theadvanced art class are to hold andtouch the clay, mold it in his handfor a few seconds and socially haveopportunities to meet and makenew friends. This is already hap-pening in his reading class. Origi-nally, the inclusion teacher estab-lished a goal for Paulo to collectthe attendance and take it to theoffice. However, his sixth periodreading teacher decided she wantedPaulo to be included as a memberof the class and to have the class beas meaningful for him as it is forthe other students. She developed,in collaboration with the inclusionresource teacher, a plan to familiar-ize Paulo with the classroom sur-roundings so he would know wherehe was and then encouraged theother class members to feel free toapproach and talk to Paulo. Nowmany of the students in the classhave name signs and talk to Pauloevery day before or after class. Thegoal for Paulo, in addition to partic-ipating in the class, is communicat-ing with his classmates.

students who are deaf and blind. Oneof the major challenges has been tobreak the heavy reliance on the one-to-one student/staff ratio that is so perva-sive in this specialization area. Anotherchallenge was to impact the generalawareness, attitudes, and expectationsthat others have regarding these stu-dents. TOPS was designed to help co-workers. general education teachers,peers. and others develop competen-cies in using specialized orientation

16 Ulmer 19v.:

and mobility. augmentative communi-cation. and other systematic supporttechniques.

By addressing these specific con-cerns within the context of totalschool restructuring. TOPS has affect-ed a change in services and in the ser-vice delivery systems. Students whoare deaf and blind are spending timein new places. engaging in new activ-ities, and establishing new relation-ships. In the remainder of this article.

demonstration activities and outcomeswill be described across three areas:inclusion, person-centered planning,and transition.

InclusionWhen the TOPS project began, the

majority of students who had severedisabilities, including those who weredeaf and blind, were served at one cen-tral school site. Now, students withsevere disabilities are physically locat-ed on integrated sites with an increasedemphasis on providing education atstudents' home schools. As a result ofthis conversion, individual schools arebeginning to make site-based decisionsregarding the best education practicesfor students with severe disabilities andhow that process fits into the totalframework for educating all students.The inclusion of students in allaspects of school life has been a uni-fying theme of the project.

Montgomery High School decidedthat the traditional service deliverymodel (special day classes) did notadequately meet the educational needsof the students enrolled in the program.An inclusion team comprised of theassistant principal, general educators,special educators. and a project coordi-nator from San Diego State Universi-ty's lnterwork Institute set its focus onhow to organize an inclusion projectthat would have a zero reject philoso-phy. Students, including those who aredeaf and blind, have had schedulesdeveloped according to their individualstrengths, weaknesses, and interests.Ten students are taking classes in 12different subject areas and have 20 dif-ferent teachers offering an array ofcourses to students in grades 10-12.Since the beginning of the school year.the inclusion team meetings have beenheld every two weeks. The main focusof the meetings is student updates,strategies for ongoing staff communi-cation. support. and problem solving.Discussions among team membershave elicited valuable informationabout the changes in student and

27

teacher behavior, strategies that areeffective with the inclusion of studentsin regular classes, and changes withinthe learning environment of the classesthemselves.

Significant changes have occurredsince the inception of the inclusionproject. Teachers have made observa-tions about the overall impact that theproject is having on all of their stu-dents, including the inclusion students:

Classes as a whole are not as"rowdy."Comfort levels between students.teachers, and inclusion studentshave improved.

Students evince more compassionand socialize more with inclusionstudents.

Inclusion students arecommunicating more frequently toboth teachers and their peers.

Many successes have occurred.However, many challenges and issueswill still need to be addressed in futureplanning meetings. The project teamcollectively has developed through thisexperience a dedication to the successof inclusion students"to making itwork."

Person Centered PlanningNew initiatives to create a more col-

laborative outcome-oriented planningprocess are occurring throughout thecountry. Processes that invite participa-tion and focus on an individual'sstrengths and desires for school andcommunity inclusion are being devel-oped. In these processes. new commit-ments from paid and nonpaid supportpeople are realized, and there is anexpectation that roles and responsibili-ties will be shared. The process isdesigned to be dynamic and comfort-able as opposed to time-limited andprocedure-driven. These developingprocesses have been organized in sev-eral formats, by several names, withmany creators. These processes comeunder the general heading of person-centered planning.

L

t

Various versions of person-centeredplanning with adolescents and youngadults who are deaf and blind havebeen developed under this grant. Eachperson-centered planning team requiresa great deal of personal commitment.creativity, and perseverance. Theresults and outcomes have been excit-ing. Person-centered planning hasbecome the central strategy toachieve inclusion in the project.Much of the change in Paulo's pro-gram, for example, is the result ofperson-centered planning efforts.

Person-centered planning meetings,such as McGill Action Planning(MAP) meetings or Personal FuturesPlanning meetings, are designed togenerate an action plan to include andenhance an individual's participationin activities at school, home, and in thecommunity ( Vandercook. York.& For-est. 1989). These planning meetingsoften facilitate a student's transferfrom one class to the next or are fre-quently planned to help with the Indi-vidualized Educational Plan (IEP). theIndividualized Transition Plan (ITP),or the Individualized Program Plan(IPP) development. The goal is to

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V.

focus on the choices, strengths. andneeds of the individual through a coor-dination of services (Mount andZwemik. 1989).

Depending on the age of the individ-ual and his or her unique circum-stances, a person-centered planningteam or "circle" will be composed offamily members, friends, neighbors.general and special educators, class-mates. or co-workers. One group mem-ber serves as facilitator and one recordscomments and ideas. A variety ofinformation is collected from some, orall, of the topical questions below(Vandercook. York. & Forest. 1989:Mount & Zwernik. 1989):

Who is the focus person?

What is the focus person'shistory/background?

What are the dreams/goals for thefocus person?

What are the concerns or fears?

What does the focus person nowdo? (relationships, places,activities, preferences, choices)?

What are the focus person'sstrengths. gifts, and abilities?

Iiinfer 1993 27

Cristina is a young lady, 22years old, who recently graduatedfrom the school transition program.Cristina is legally blind and hearingimpaired and has some mental dis-abilities. Cristina has lived in severaldifferent group homes since thedeath of her parents. One of herdreams is to get reconnected withfamily members and move into amore independent living situation.

As a student in the transition pro-gram, Cristina was the focus offutures planning meetings wheremajor issues and changes in herschool to adult life were addressed.Participants in Cristina's school andpersonal life came together to meetin a united effort to plan for thefuture. Cristina wants to move fromSan Diego to the Richmond area tobe near her family. She needs to findprograms that provide instruction inindependent living skills and sup-ported employment. Cristina wouldprefer to live in a supported livingsituation with one roommate. Profes-sionals and family members in boththe San Diego and Richmond areaswere involved in the meeting (usinga speaker phone in both locations). Agreat deal of networking had takenplace prior to the meeting which

resulted in staff participation fromseveral agencies in the Richmondarea.

In the school transition program,Cristina has had various work situa-tions and experiences. She hasreceived mobility training and hassuccessfully learned to utilize a caneand travel on public transportationfrom home to the transition programand from home to work. Cristina'ssupport staff developed a job at alocal grocery store during her lastyear of the school transition pro-gram. The manager conducted amodified job interview with Cristina.A picture employee manual wasdeveloped highlighting the majorpeople, places, job duties, and equip-ment she would need to know in thestore. The timesheet was enlargedand adapted to meet Cristina's needs.This book was shared and clearedwith the manager so that he wasaware of the accommodations, tech-niques, and support being providedto Cristina. The manager of the storefelt responsible for training his newemployee; therefore, Cristinareceived natural support from her co-workers. Co-workers ate lunch withher, gave her instructions aboutcoupons, demonstrated job tasks,

and trained her to bag groceries, giv-ing her the necessary support untilshe could function independently.Co-workers have become compan-ions and friends of Cristina, theyeven surprised her with a birthdayparty. She continues to work in thegrocery store 12 hours per weekearning $5.75 per hour. Because ofCristina's success in her employ-ment situation, the planning teamdecided to ascertain the possibility oftransferring her to another branch ofthe grocery store in Richmondamove of which the store has beensupportive.

Cristina continues to work at thegrocery store awaiting a placementopportunity in an independent livingsituation in Richmond. In addition toworking, Cristina has joined a sup-port group facilitated by the Servicesfor the Blind Community Center.The Department of Rehabilitation,Regional Center, and the supportnetwork continue to monitor Cristi-na's activities and maintain contactto facilitate Cristina's move.

The future planning meetingaccomplished the goal of developinga strong support circle/network to sether goals and dreams more compre-hensively and actively into motion.

What are the focus person'ssupport needs?

Who will implement the ActionPlan to help the focus person reachhis or her goals?

Person-centered planning is design-ed to put the student at the "center" ofthe process. The goal is to develop aplan with the student, not for the stu-dent. Therefore, it is critical to maxi-mize the student's active participationin the process. Many students who aredeaf and blind or have other multipledisabilities cannot readily engage in anexchange of traditional questions andanswers regarding their overall inter-ests or what they would like to seeincluded as a part of their educational

?8' It inter I99.

or adult experiences. This makes theiractive participation in a meeting chal-lenging. TOPS uses a variety of strate-gies to maximize student participationand input from those who might other-wise be characterized as "nonverbal."Overt behavior usually has commu-nicative intent. Therefore, a student's"affect" provides the planning team agreat deal of insight to preferred andnon-preferred settings, events, andpeople. Facial. vocal, and body move-ments can be observed to indicatelikes, dislikes. and choices. A student'sbehavior over the years across differentschool. work, and community experi-ences can be used to infer likes, dis-likes, and needs. Certainly a variety ofpeople who interact the most with a

student have valuable contributions tomake since they have experienced dif-ferent activities together and haveobtained a significant amount of infor-mation from the student. Therefore.people who interact with the student ona regular basis must be prepared toshare this type of information.

It is important to make the discus-sion at the meetings as concrete as pos-sible for the student. If familiar peopleare introduced by learned name signs.team members can gain some insightby observing the student's reaction. Ifa student has learned to use a calendarbox to understand his daily schedule ofenvironments and activities then thisbecomes a tool that might solicit infor-mation and involvement during the

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meeting. If a meeting is being held tofocus on particular types of subjects,holding the meeting in a subject-relat-ed setting familiar to the student mayalso help encourage involvement. Itwould not be hard to see when a co-worker comes to a meeting and pro-vides the student with his name signthat the student's excitement means helikes his co-worker and/or his job. It isalso a concrete way to help the studentrealize that the discussion is now con-cerning work. Using these referents tocurrent everyday school. work, andhome life are very helpful ways toactively solicit students involvementand input.

Videotapes have also been incorpo-rated by the TOPS staff at these meet-ings so people who do not know the stu-dent well can see each functioning at hisor her best, in familiar settings andactivities, with familiar people. andusing effective supports. Videotapes.pictures. and written references repre-sent much more accurately the student'scompetencies and needs than does per-formance at a meeting. TOPS hasplaced a great deal of emphasis onadapting this format to develop formal-ized active support systems based on theindividualized needs of the focus personand to begin to connect students withtheir community. peers. and co-workers.

Transition"I look at transition as the key to the

success of special education in thefuture.- This was written by PatrickCampbell. the former Assistant Superin-tendent/Director of Special EducationDivision for the California Departmentof Education.

The federal government is now man-dating the "School to Work Transition"for students in special education as partof the Individuals with Disabilities Edu-cation Act (IDEA) and the Rehabilita-tion Act. Transition is an extremelyimportant aspect of a student's educa-tion program. including those studentswho arc deaf and blind. Transition hasbecome the framework for describing

George is an 8th grader in juniorhigh. Prior to his arrival at Mont-gomery Junior High, his previousteacher went to great lengths toensure a solid support system was inplace by writing an IEP developedby his parents and teachers, and bymeeting with George's new teachersthroughout the summer to facilitatehis transition.

George has had many new experi-ences since his arrival at Mont-gomery. He has learned to ride thecity bus independently from home toschool (with the initial assistance ofthe mobility instructor), to changeclasses, to work with an interpreter,and is struggling to establish hisidentity just like any other juniorhigh student. During the spring of1992, three of his teachers decidedto plan a MAP meeting to helpGeorge prepare for the 8th grade.Together with his family, friends,and general education teachers, ideaswere brainstormed for assistingGeorge to become more activelyinvolved in school, to participate incommunity activities, and to developmeaningful friendships. Some spe-cific areas focused on were helpingGeorge's family learn sign languageand having George develop more

conversational strategies by using acommunication book. Next, the dis-cussion identified potential problemsthat could block these activities suchas being too physically aggressiveand not following directions. Final-ly, the group developed an actionplan, specifically listing who wouldbe responsible for implementing theideas generated by all of the partici-pants.

Since last spring, many positivechanges have resulted from theMAPS meeting. George is involvedin thre general education classesLife Skills, Home Economics, andPhysical Education. During 6th peri-od, George works as an office aide.He now has a full-time interpreterand this has greatly improved hiscommunication skills.

Two additional activities dis-cussed during the MAPS meetingare in process. These are the devel-opment of a circle of friends and theopportunity to select and join a clubor an extracurricular activity atschool. The changes in George'sschedule and the support from hisfriends and family have enhancednot only the quality of his educationprogram but also the quality of hislife.

the ideal adult life of the students in theproject.

Too often, professionals have fallenshort when planning effective and sys-tematic programs. either during the tran-sition from school to school or fromschool to adulthood. This is even moreapparent in the lives of students who aredeaf and blind (Maxion, et al. 1989:Hasazi. 1988; Goetz. Guess & Stremel-Campbell, 1987).

SummaryTOPS has been a very exciting col-

laborative project. It has significantlyenhanced the quality of life of manyindividuals. Many schools have nowendorsed new ways of structuring

3 0

resources to improve the education ofall students. Our preliminary findingscan be summarized as follows:

The use of home inventories hasprovided tremendous insight intoconcerns and needs of families andthe willingness of parents to beactive educational partners.

Our limited but intensiveexperience in person-centeredplanning has convinced us of thevalue of these approaches inrelationship building, developingmore meaningful methods ofinstruction, and balancing therelationship between specialized,generic, and natural support.

Siblings have shared insights thatconfirm our most basic

11 inter 1993 29

Christine is another student inthe Transition Program. She is deafand blind and utilizes a cane or acane and sighted guide for travel.Christine has participated in theTransition Program for four yearsand will soon transition to an adultprogram. Christine utilizes an objectcommunication system (calendarbox) for constructing her dailyschedule and routine at school. Acane loop is used for indicating trav-el/mobility, a bus pass for bus travel,a towel for the exercise club, a chipbag indicates break, and a lunch bagindicates lunch. Other object cuesinclude a wallet for community out-ings, a swimsuit strap for swimmingat the public pool, shopping bag han-dles for grocery shopping, and apaper towel for bathroom. Christinealso has a portable system (a small3-ring binder with objects) that shecarries in a fanny-pack. In additionto the object systems, she uses sever-al hand signs to communicate.

A futures planning meeting wasconducted in the spring of 1992.Christine's foster mother, schoolstaff, adult program staff, and a rep-resentative from the Helen KellerFoundation participated in the meet-ing. A videotape was presented toshare information about Christine'sdaily activities. She has worked at apizza restaurant folding deliveryboxes, and at a local variety storepricing items. Her daily routine hasincluded, as part of her transitionplan, several work experiences, trav-eling in the community on publictransportation, swimming at a publicpool, exercising at a local fitnessclub, shopping, and preparing simplemeals. The video provided importantinformation about successful instruc-tional methods and techniques thatwould be valuable for her futureadult program staff. As a result ofthis meeting, the transition fromschool will be smooth without a"break" in service.

assumptions about services.placement on a high schoolcampus, even if it is the homeschool, and placement in a workenvironment, even if it is anintegrated one, creates theopportunity to develAp newrelationships and learn new skills.but the placement alone isinsufficient for guaranteeing thatthose things will happen.

Moving instructional staff from anactivity center to an instructionalfocus requires developingcredibility. tact. creativity,teamwork, and patience.

30 11 inter /993

Using the process of transition todescribe an ideal adult lifestylecan lead to a more responsivesense of community and increasedcollaboration between families andprofessionals.

Helping and recruiting peers toconsider relationships other thanthat of a peer tutor requires moreof a change in teacher versus peerattitude.

Developing relationships andfriendships between peers takes aconsiderable amount of time andis endless. i

3

ReferencesDougan, Pat. (1992). Transition Ser-

vices Language Survival Guide for Califor-nia. Directors Forum on Transition Sur-vival Guide Committee.

Falvey, M.A. (1989). Coninzunit BasedCurriculum: Instructional Strategies forStudents with Severe Handicaps. Baltimore:Paul H. Brookes Publishing Company.

Goetz, L., Guess, D.. & Strand-Campbell. K. (Eds.). (1987x. InnovativeProgram Design for Individuals with DualSensory Impairments. Baltimore: Paul H.Brookes Publishing Company.

Haney, J. (1989). Toward successfulcommunity residential placements for indi-viduals with mental retardation. In L.W.Heal, J.I. Haney and A.R. Nov ak Amada(Eds.). Integration of Developmentally Dis-abled Individuals into the Community (2ndEd.). (pp.125-168). Baltimore: Paul H.Brookes Publishing Compan>.

Hasazi. S. (1988). Facilitating transitionfrom high school: Policies and Practices.American Rehabilitation.11 (31. 9-16.

Kaplan, S. (1989. June). Self Advocacy.Support Groups and California Citizenswith Developmental Disabilities. Paper pre-sented at a workshop sponsored by theArea Thirteen California DevelopmentalDisabilities Board. San Diego. CA.

Maxion, J., Morris, B.. Hesche, S.,Sousa. M.E.. & Tweit, D. x 1989 ). SanDiego Transition Guide: A Guide for Inter-agency Collaboration for the SuccessfulTransition of Students with Moderate andSevere Disabilities from School to AdultLife. Unpublished Manuscript.

Mount. B. and Zwernik. K. (October.1989). It's Never Too Early. It's Never TooLate: A Booklet About Personal FuturesPlanning. St. Paul. Minnesota Governor'sPlanning Council on Developmental Dis-abilities. Publication No. 421-88-109.

Perskc, R. (1988). Circle of Friends.Nashville: Abingdon Press.

Vandercook, T., York, J.. and Forest,M. (1989). "The McGill Action PlanningSystem (MAPS): A Strategy for Buildingthe Vision." Journal of the Association forPersons with Severe Handicaps 14. 3:205-215.

TRUE OR FALSE?Truly Collaborative RelationshipsCan Exist Between University and

Public School Personnel

Terri Vandercook, Ph.D.

Jennifer York, Ph.D.University of MinnesotaInstitute on Community

Integration and the Departmentof Educational Psychology

Beth Sullivan, Ph.D.Forest Lake Area School

District #831

True. Although. the following fre-quently heard comments might

indicate otherwise. From public schoolpersonnel:

-Whose dissertation is this?""What's your budget for subcontractsto schools?" "When do you expect tohave your program in place?" "You'rethe experts. what should we do?" "Thisis the real world. you know."

From university personnel:"Implementing this program is mini-

mally intrusive and recording the datawill require very little staff time." "Theprocedures must be followed exactly."

In five years we know the results.""The research indicates that...-We'll need five students between theages of 8 and 14 who have the labelu(... but not... 'How stringent isyour human subjects review process?"

1/1.

.0444Low

./.

S

Winter 1993

32 nu Y AVAILABLE

31

USERS News In Print -

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Public schools and institutions ofhigher education perform different func-tions. operate in different realities, arefaced with different constraints, and arereinforced for different outcomes. Indi-viduals in each of these systems. how-ever, share many of the same interests,in other words, addressing the problemsfacing today's children and youth inpublic education. Such similarities pro-vide a reason to join together in collabo-

32 U Inter 1993

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rative partnerships. Differences betweenthe systems can make those partnershipsstrong. efficient, and ':7ctive. If peoplefrom each system performed the samefunctions, knew the same information.and had access to the same resources.there would be no reason to join togeth-er. The differences promote learningand create positive interdependence.The individuals and the context of eachsystem have unique and complementary

BEST COPY AVAILABLE

3.i

features and contributions. Publicschools are charged with direct serviceresponsibility for educating all childrenand youth ages 5 through 18 with afocus on preparation for desirable post-secondary outcomes. Universities areresponsible for inquiry regarding effec-tive practices, dissemination of pertinentfindings, preservice preparation of per-sonnel to work in the public schools.and service to the broader educationcommunity. Public schools provide thecontext for the functions of disciplinedinquiry and research dissemination aswell as field experiences for preservicestudents. University personnel offer topublic schools support in the develop-ment and validation of effective prac-tices and graduates prepared to functionin the public schools. Ongoing partner-ships between schools and institutionsof higher education are mutually benefi-cial.

If the differences between the publicschools and institutions of higher educa-tion provide the basis for potentiallycollaborative partnerhips, what makesthese partnerships work? The key lies inthe use of a collaborative style of inter-action. Friend and Cook (1992) definedinterpersonal collaboration as "a style

if for direct interaction between at leasttwo coequal parties voluntarily engagedin shared decision making as they worktoward a common goal." The frame-

E.-, work used in this article for offeringspecific strategies and examples of col-laborative partnerships between publicschools and institutions of higher educa-

.;:: tion is based on the work of Friend andCook (1992). The shared goal aroundwhich we have joined with publicschools is the creation of inclusiveschool communities where all childrenbelong. Our experience tells us that useof a collaborative style of interactionbetween university and school districtpersonnel increases the likelihood that

innovation such as the inclusion ofchildren with disabilities in the schoolcommunity will be institutionalized andnot fade away when the universityinvolvement is formally ended.

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Characteristics for Collaboration

Defining Characteristics What Works? What Doesn't

Mutual Goals Develop a relationshipEngage in small scale effortsinitiallyShared philosophy

Engage in a long termcommitment without havingestablished a relationship

Voluntary Participation Involve key stakeholdersInvite participation

Work with only one or twoindividuals on somethingthat will impact many

Parity Among Participants Use names, not titles wheninteractingRotate and share team roles(e.g., facilitator, timekeeper,recorder)Structure ways to facilitateparticipation

Call John Jacob, ProfessorJacob, instead of John.Reserve the role offacilitatorfor a select few

Shared Responsibility forParticipation andDecision Making

Shared perspectives aboutdecisionsBrainstorming before decisionmakingBalance between coordinationof tasks and division of laborClear delineation of agreedupon actions as follow-up

Assuming that tasks mustbe divided equally and thateach party must participatefully in each activityPlacing decision makingresponsibility with oneindividual or party

Shared Accountability forOutcomes

Acknowledging risks andpotential failureCelebrating successtogetherEmbracing failurestogether,adopting a "learningfrom failures" mindset

Trying to determine who toblameGiving awards to individualsfor team efforts

Shared Resources Identify respective resourcesHaving mutual goals .

Highlighting the benefitsof sharingJoint decision making aboutresource allocation

Protect, not reveal resourcesHaving no mutual goals anddisparate benefitsUse own resources afterdepleting other's resources

Defining Characteristics forCollaboration

Friend and Cook (1992) conceptual-ize collaboration as a style of interac-tion, that is. how individuals or groupswork together. not what they do. Inaddition, they offer six defining charac-

teristics: based on mutual goals. volun-

tary participation, parity among partici-

pants. shared responsibility forpotion and decision making, sharedaccountability for outcomes, andshared resources. Each of these charac-teristics is discussed below with exam-ples related to partnerhips between pub-lic schools and universities on the issueof inclusive school communities. Mostof the examples are drawn from the col-laborative partnership with one school

34

district. The University of Minnesota'sInstitute on Community Integration andthe Forest Lake School District wereawarded a three-year grant from theOffice of Special Education and Reha-bilitative Services, U.S. Department ofEducation, to assist in operationalizingjoint commitment toward returning stu-dents with disabilities to the school theywould ordinarily attend if they did not

Winter 1993 33

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have a disability, and to be active partic-ipants in general education classes andschool life. The collaborative work rep-resented by this grant, Achieving Mem-bership in Home Schools for Studentswith Severe Disabilities, contributedmany lessons. Table I presents a sum-mary of facilitating and inhibiting prac-tices, in other words, what works andwhat doesn't related to each of the char-acteristics.

Based on Mutual Goals

Having at least one mutual goal isnecessary to the foundation of collabo-rative partnerships. Having a mutualgoal energizes individuals to be com-mitted to achieving their goals. Collabo-ration is hard work. And for most indi-viduals, it involves developing a newmindset as well as a new set of task andrelationship skills (Thousand & Villa.1992).

In working to develop inclusiveschool communities, a shared philoso-phy on outcomes for children has led tomutual goals on br .onging and mem-bership and often has helped us to getthrough some of the really tough situa-tions. A principal with whom we haveworked reminded his staff many timesthat what is most important is thatJimmy (a student) belongs in ourschool, he is a member of our commu-nity, he needs to be here to learn and getconnected with others in his communi-ty, and they with him.

Voluntary ParticipationA collaborative style of interaction

cannot be forced. One can require indi-viduals to meet and impose a structureintended to facilitate collaborative inter-actions. but one cannot control howindividuals interact with one another.When hierarchical control is removed(e.g.. a directive from a superior that anindividual must be involved) andinstead, an invitation is extended, thedesired result of participation is likely tobe achieved but the circumstances underwhich the individual participates (i.e..voluntary, individual choice) signifi-

34 Winter 1993

cantly changes the type and degree ofparticipation.

Related and equally devastatingwhen it comes to the success of collabo-rative efforts is the issue of representa-tive participation. Adequate involve-ment of key stakeholders in collab-orative efforts cannot be overstated.This is a lesson that has emerged for usfrom repeated learning opportunities. Inone district we developed a plan for"collaboration" with a district adminis-trator that in reality would impact on thestaff members and families of a numberof schools, without involving some ofthose key individuals in the initialdevelopment of the plan. Similarly.plans were developed with a large rep-resentative group of special educators tosignificantly change the model of ser-vice provision for special education.Lack of participation by general educa-tion (the constituency on which anequally substantial impact would befelt), resulted in a plan generated frominsufficient diverse input in addition tolack of ownership from key con-stituents. Conversely, a representativegroup of general educators was engagedin developing a school's vision and indialogue about aligning practices withthe vision. Inadequate involvement ofspecial educators resulted in a skewedvision of an inclusive community and alack of shared ownership to the vision.When introducing an innovation orchange such as returning and includingchildren with severe disabilities to anage-appropriate class in their homeschool, there will always be resistanceand significant change wiil take time.but some of the difficulties could bealleviated with an approach that invitesrather than dictates collaboration andthat adequately represents all key stake-holders in the design and process ofchange.

Parity Among Participants

Parity among participants is the char-acteristic essential for collaborationdefined as each person's contribution toan interaction is equally valued and

35

each person has equal power in decisionmaking (Friend & Cook, 1992). Usingnames instead of titles when interactingis one simple facilitator of a sense ofparity. Superintendent Jones is knownas Bill and Dr. Smith is known as Sarah.Shared leadership promotes parity aswell. There is an expectation in collabo-rative teamwork that there is not oneleader but rather a team of individualswho share responsibility for facilitatingmovement toward a common goal. Col-laborative teems are essential to the taskof including student with significantdisabilities in his/her age-grade class.The collaborative individual studentteam meeting is one example of parityat work. The primary support roles(facilitator. timekeeper. and recorder)for these meetings are rotated andshared among A team members. Incontrast to many school meetings, fami-ly members and paraprofessionals serveas meeting facilitators. Parity assuresmore effective training experiencesalso. Because the development of inclu-sive school communities is new learn-ing for most individuals, our work withschool districts has involved quite a bitof training and we have always workedwith people in the district both to devel-op and teach the courses.

Shared Responsibility forParticipation and Decision Making

Individuals involved in a collabora-tive effort are expected to share respon-sibility for both participation and deci-sion making. Shared responsibilitymeans making a commitment to partici-pate in the activity and the decision-making involved. Shared participationin task completion does not imply thatthe individuals involved n.Jst divide thetasks equally or participate fully in eachof the different activities required toreach the goal (Friend & Cook. 1992).In fact, effective collaboration involvesa balance between coordination of tasksand a division of labor (Johnson &Johnson. 1987) based on an individual'sunique gifts. talents, and interests. Not

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everyone is expected to engage in alltasks to the same degree.

As an example. university personneloften collaborate with individuals froma school district to plan staff develop-ment activities and approaches. Univer-sity personnel may volunteer to draft aneeds survey. analyze the results, anddevelop content outlines based on theinformation. School district personnelagree to distribute the survey, identifydates and places for training. and securea representative task force to work withuniversity personnel in finalizing con-tent decisions and instructionalapproaches. Both university and schooldistrict personnel are actively involvedin the task even though the differentactivities may not require equal effort.Even though the tasks each partyengaged in may not represent an equaldivision of labor, there is equal responsibility for the decision making which ispart of the staff develop-gent effort. Inthis example that woula include decid-ing the appropriateness of the needs sur-vey, the survey information to be ana-lyzed, the administration approach to beused, the logistics of training, the con-tent of training, and the instructionalapproaches to be used. University staff

to

usually do more development of andexecution of training, but school person-nel must devote most of their efforts tosix hours per day of direct instructionwith children.

Shared Accountability for Outcomes

In other words, we sink or swimtogether. Whether the outcomes of thecollaboration are successful or not.everybody shares in those outcomes.When successful, all share in celebra-tion. When not successful, all shareresponsibility for that as well. With acollaborative approach. better ideasemerge. No one person is responsiblefor either successes or failures, whichmakes individuals involved more will-ing to acknowledge and learn from theirfailures, rather than covering them up.This characteristic of collaborationallows individuals to be more willing totake risks and to chance failure. A lackof collaboration results in the counter-productive activity of finger pointing.Two examples will illustrate how issuesapproached in a collaborative fashionwith a sense of shared accountabilityresulted in outcomes superior to thosethat would have been possible in isola-tion.

36

The first example occurred at theclassroom level. Andy was a kinder-gartener who tended to leave the class-room and the scliool whenever themood struck him. This was an extreme-ly serious issue because the elementaryschool he attended was located on ahighway. In fact, Andy did end up onthe highway one day near the beginningof the school year. The team immediate-ly came together and began brainstorm-ing. Many ideas were generated andsome. understandably, were quite dras-tic (remember this was a team feelingvery scared about Andy's safety). Someof the ideas included: tactilely offensiveitems on the doorknob such as corncobs with the husks still on them, abeeper on the door, a beeper on Andy.the door being locked with a latch up atthe top of the door (the Fire Departmentinformed us this would be quite illegal,but there were still team members whowanted to do it), a Scandinavian wreathwith bells on it for the door. Some ofthose ideas were implemented withsome success initially. However, theeventual combination of ideas that wasimplemented and worked included: (1)an automatic closer on the door, whichalso made it harder to open and a chimethat went off whenever the door wasopened; (2) explicit directions to adultsand children who may be going in andout of the door to be watchful that Andydid not wander out: (3) a red alert planwith the code name DEAR which stoodfor Drop Everything And Run whichwas to go out over the intercom shouldAndy wander, in order to alert keyadults in the building to run to and outthe nearest exit in search of Andy. Thisplan was shared at a faculty meetingand through written communication toall staff members. Of course, Andy'sfamily was a part of all brainstormingand strategy identification as well. Inaddition to this reactive plan, a proac-tive plan was designed. The focus beingto increase attention to changing theKindergarten environment so that Andywanted to be there and to developing acommunication system for Andy so that

Winter 1993 35

when he needed or wanted to leave for ashort break, he had a way to make andcommunicate some choices. Thisincluded picture options by the door-way. such as physical education equip-ment like a bike or ball which indicateda request for a short run in the gym, apicture of the school secretary, indicat-ing a quick visit to the office. The cre-ativity of ideas and the inclusion of theschool community as part of the supportstrategy is one illustration of the powerof collaboration and shared accountabil-ity. A collaborative approach allowedpeople to be very open about the prob-lem and enlist many people in generat-ing and implementing some strategies.The broad support would not have hap-pened if only one person had feltresponsible for Andy's wandering andits solution. At the end of the schoolyear, in interviews with some of theschool's support staff. one of the cookstalked about the DEAR strategy andproudly reported that Andy was doingmuch better now. During the interviewwith the school secretary. she talked onand on about how proud they were oftheir Andy. Not only was this collabora-tive approach effective for Andy, but asense of pride in Andy and in this staffemerged.

A second example of a sharedaccountability leading to better out-comes occurred at a systems level andinvolved the university support configu-ration provided in a school district withwhom we are engaged in a three-yearcollaborative effort to develop inclusiveschool communities. The universit\support structure changed drasticallyfrom year one to year two of the pro-gram as a result of moving from work-ing with one elementary school to sixelementary schools. University supportchanged from more direct, hand in handsupport to one school to more indirectsupport to the Inclusion Partners (spe-cial education support teachers) in eachof the six elementary schools and toindividual student teams as crises dictat-ed. For many reasons, the support struc-ture did not work well, it was very tax-

36 li inter /993

ing on the primary university supportperson and also not extremely capacity-building for the district. However,instead of wasting any time pointingfingers or trying to figure out whosefault this might be. we just got together,defined the problem, generated potentialsolutions, took those ideas to key play-ers in the district in both verbal andwritten form, got their best ideas aboutwhat they thought made sense, thendeveloped a plan. This plan incorporatespeople's best ideas. and because theywere a part of developing it, there is aninvestment in making it work and alsoan openess to let one another know ifand when it is not working.

Shared Resources

Individuals engaged in collaborativeactivities each have resources that canbe contributed to reaching the sharedgoals (Friend & Cook. 1992). This lastcharacteristic brings us full circle to oneof the primary points made in the intro-duction. University and school districtpersonnel perform different functions.know different information, and haveaccess to different resources. Thismakes the sharing of resources betweenschool district and university personnelespecially advantageous. The fact thatresources never seem to be adequatemakes pooling of resources a motivatorfor individuals to collaborate. Unfortu-nately. it can also have the oppositeeffect of individuals attempting to clingtightly to the resources over which theyhave control. This fact makes it impor-tant to approach discussions of sharedresources directly and in a way thathighlights the benefits for all involvedparties and that keeps individualsfocused on their mutual goals.

Emergent Characteristics forCollaboration

In addition to the previous six defin-ing characteristics. Friend and Cook(1992) identify emergent characteristicsfor collaboration. Emergent characteris-tics may be present to some degree atthe outset of a collaborative partnership

3 7

but they definitely emerge and growfrom successful experiences with col-laboration. Each of these characteristicsare discussed below with examples pro-vided.

Individuals Who Collaborate ValueThis Interpersonal Style

It is helpful when those engaging in acollaborative endeavor begin with acommitment to collaboration and abelief that collaboration will result i I

better outcomes, especially because col-laboration does not come easily to manyand takes longer, at least initially. How-ever. while a shared commitment andbelief in the power of collaboration ishelpful. it is not essential for everyonebecause people can come to value a col-laborative style of interaction. It is noteasy to find individuals who have a col-laborative work style. working alone isquite normative for teachers, adminis-trators. and university personnel. In ourpartnerships. it seems especially diffi-cult for the adults involved in change.many of whom (like us) did not growup and have not been socialized incooperative and collaborative ways ofinteracting. Most people were trained towork in isolation and, unfortunately,most have received little or no trainingor experince in the use of a collabora-tive style of interaction. Given the lackof personal experience coupled with thefact that collaboration is harder andtakes more time, at least initially, youcan see why people may not immediate-ly embrace the use of a collaborativestyle of interaction.

Individuals Who Collaborate TrustOne Another

Trust does not automatically occurbecause individuals have made a choiceto work collaboratively with one anoth-er. Trust is established over time as indi-viduals work with one another. becomesecure in the commitment each hasmade to one another. and as inevitableconflicts are resolved and collaboratorsremain. connected and supportive.

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One of the most time intensive col-laborative activities schools and univer-sities ever engage in is grant conceptu-alization, writing. implementa- tion. andevaluation. Some approaches to grantdevelopment yield better results thanothers. The following examples illus-trate lessons learned in this regard. Onegrant was developed primarily with theinput of only one district administratorand two university people. A secondgrant was developed, primarily with theinput of a group of district administra-tors: it included plans for securing theimmediate involvement and input of allkey stakeholders in developing theaction plans outlining our collaborativework with the school districts if thegrant were funded. A third grant waswritten with a school that universitypersonnel had been working with andlearning from on an informal basis formore than a year. This proposal trulywas a collaborative/collegial effort andwas greatly facilitated by a history ofworking together and the resulting trustand commitment to a shared vision ofwhat we thought schools could be forall children and adults who are a part ofthe school community. The grant devel-opment processes described above werepresented in chronological order reflect-ing our learning along the way! Howev-er, despite a lack of collaboration in ear-lier efforts, a sense of trust wasestablished through ongoing worktogether. but early work was morestrained. Trust is established over andover again as you work with new indi-viduals or new schools in the district.

There is such a strong stereotype thatthe role of university personnel inschools is not particularly helpful.When v.: hear, "You're a universityperson?!" we know we have enteredinto a new realm of trust and collabora-tion. That is truly an indicator to us thatwe are doing something right.

A Sense of Community :Evolves fromCollaboration

Individuals who use a collaborativestyle of interaction feel more supported

and feel a part of a larger whole. It isthis whole that encourages and makesuse of individual strengths and mini-mizes the relevance of weaknesses. Oneof the most salient outcomes of theprocess required to achieve inclusiveschool communities for children is thatadults, as well as children, involved inthe process learn about and experience asense of belonging and being valued ina community.

ConclusionIn conclusion, a more specific focus

is given to the relationship betweeneffective public school and universitycollaboration and the institutionalizationof change. This is of central importancerelated to the grant awarding function ofthe Office of Special Education andRehabilitative Services. In the absenceof collaboration, institutionalization ofchange is not possible. The characteris-tics of mutual goals. voluntary partici-pation. parity- among participants.shared responsibility for participation<ind decision making. shared account-ability for outcomes, and sharedresources, provide a framework for thedesign, development, implementation.and evaluation of projects. In learningmore about and having become moresuccessful in a collaborative style ofinteraction, greater institutionalizationof change has also been realized.

In one collaborative partnership sup-ported in part by federal grant money,the following outcomes indicative ofinstitutional change that supports theinnovation of inclusive school commu-nities have been realized:

Children are moved, students withsevere disabilities who were onceall served in a center basedclassroom are now being served intheir home schools, as members ofage-grade classrooms.

Early childhood programs are allcommunity-based.

Special educators in the district areable to use Fridays to collaboratewith and learn from others

:38

meeting. coteaching, developingmaterials:

Job descriptions have beenchanged. Inclusion Partners areformer teachers of self-containedprograms whose primaryresponsibility now is supporting themembership, active participation.and learning of students withdisabilities who are members ofage-grade classrooms.

Summer school is now integratedwith the district's school-age childcare progra n.

Special educators are beginning tocollaborate with one another at thebuilding level and provide non-categorical special educationsupport when it makes sense to doso.

An elementary principal wasrecently heard to say, "He is ourstudent, we need to figure out howto make it work."

These outcomes have resulted from athree-year university/school districtpartnership. In this partnership, manymistakes have been made. Upon reflec-tion. we believe that our commitment toa collaborative style of interaction iswhat, in the end, has ins;_tred positiveoutcomes for those children included intheir school community and has solidi-fied a district commitment to insurethose same outcomes for children itmay serve in the future. i

ReferencesFriend. M. & Cook, L. (1992). Interac-

tions: Collaboration skills for school profes-sionals. White Plains. NY: Longman Pub-lishing Group.

Johnson, D.W. & Johnson, F.P.(1987). Joining together: Group theory andgroup skills. Englewood Cliffs. NJ: Pren-tice-Hall. Inc.

Thousand. J.S. & Villa. R.A. (1992).Collaborative teams: A powerful tool inschool restructuring. In R.A. Villa. J.S.Thousand, W. Stainback, & S. StakbackI Eds.). Restructuring for caring and effectiveeducation: An administrative guide to creat-ing heterogeneous schools ( pp. 73-108).Baltimore: Paul Brookes Publishing.

Winter 1993 37

OSERS New In Print

AN OSERS News In Print SPECIAL FEATURE

Early Childhood CommunityIntegration:

An Option for PreschoolSpecial Education

Mary Beth Bruder, Ph.D.

Director

Family Support/Early Intervention

New York Medical College

rr he move toward integrated pre-1 school special education programs

is not surprising given the abundanceof research and demonstration modelsthat have collected data supporting thebenefits of such programs (Guralnick.1990: McLean & Hanline. 1990;Odom & McEvoy. 1990). These datawere derived from a conceptual basewhich emphasizes the social, ethical,educational, and legal reasons for thedevelopment of programs that integrateyoung children with disabilities andyoung children without disabilities(Bricker. 1978). As a result, the provi-sion of integrated preschool specialeducation has been cited as a qualityindicator of service delivery models forthis age group (McDonnell & Hard-man. 1988; Strain. 1990). One methodto accomplish this has been to provideintervention services to young childrenwith disabilities within communit\early childhood programs (Bruder.

38 Inter 1993

r

Sachs & Deiner, 1989; Hanline, 1990:Templeman. Fredericks & Udell.1989). Referred to as mainstreaming(Odom & McEvoy, 1990). this specialeducation option represents the inte-gration of a child into a more normal-ized setting than is usually providedwithin segregated sites.

The Infants and Toddlers Program(Part H ) of the Individuals with DiN-

abilities Education Act (IDEA), a grantprogram to assist states in developingand implementing early interventionsystems. requires that. to the extentappropriate, early intervention servicesmust be provided in the types of set-tings in which infants and toddlerswithout disabilities would participate.Part B of IDEA requires that childrenwith disabilities receive special educa-

OSERS News In Print

tion and related services to the maxi-mum extent appropriate in the regulareducation setting, sometimes referredto as the least restrictive environment(LRE). The LRE provision for specialeducation services for children agesthree to five has been further clarifiedto suggest that one program option forpreschoolers could be special educa-tion placement within a publicly or pri-vately funded program for childrenwithout disabilities. In spite of thesepolicies, this program option is notreadily available for preschool agechildren eligible for special education.There seems to be many reasons forthis, including the lack of a philosophi-cal commitment for integration, thelack of appropriately trained staff. anda lack of a cost structure to supportintegrated options within communitysettings.

Background of ProjectThe state of Connecticut is similar to

many states in providing special educa-tion services to preschool age childrenunder the Individuals with DisabilitiesEducation Act. These services havebeen provided to children from age 2.8since 1980 and Connecticut's 169 localeducation agencies (LEAs) are respon-sible for services implementation.However, since preschool childrenwithout disabilities are not eligible forfree appropriate public education inConnecticut,.opportunities for integra-tion have been limited.

Children with disabilities under theage of three can receive early interven-tion services from a variety of agencieswithin Connecticut. The State Depart-ment of Mental Retardation (DMR)provides services to the largest numberof eligible infants and toddlers(approximately 500). In 1987, DMRdecided to disband all segregatedinfant-toddler center-based programsand replace them with the provision ofearly intervention services in placeswhere typical children normally partic-ipate (e.g.. day care programs, recre-

Variables Measured on the Preschool Profile

Population Served (age of children, size of classes)Licensing RequirementsStaffing (experience, training, ratio to children)PhilosophyCriteria for AdmissionFinances and Cost for AttendancePolicies and ProceduresExperience with Children with Special NeedsCurriculumEnvironmentDaily RoutinesAdult Child InteractionsFamily Involvement

ation programs). Home-based servicesare also an option for families.

The Pediatric Research and TrainingCenter at the University of ConnecticutSchool of Medicine provided technicalassistance for this change in servicedelivery site for DMR sponsored pro-grams. One of the outcomes resultingfrom the development of this servicedelivery model was the resistance ofparents to segregated preschool pro-grams for their children after transi-tioning from an integrated DMRprogram. As a result, many of Con-necticut's LEAs were interested inexpanding integrated program optionsfor their preschool children with dis-abilities.

The Early Childhood Special Educa-tion Community Integration Project(hereafter referred to as the Communi-ty Integration Project) at the PediatricResearch and Training Center wasfunded by OSERS' Handicapped Chil-dren's Early Education Program in1988 to assist LEAs to develop inte-grated options for preschool-age chil-dren with disabilities. In particular, theproject focused on the use of commu-nity early childhood programs as deliv-ery sites for preschool special educa-tion. This model replicated the optionDMR was providing to infants and tod-dlers. The project had five objectivesand each will be described.

( I) To develop procedures forchoosing community early childhood

'to

programs in which,special educationand related services could be deliveredto preschool children with disabilities.To accomplish this objective, the pro-ject developed and used a site selectiontool that contained questions about theoverall environment of the communityplacement. The Nursery School/DayCare Profile was designed by the pro-ject staff to assist them in gatheringbasic information about the contentand quality of the community-basedearly childhood programs (daycare/nursery schools) that were inter-ested in participating in the project.The profile consisted of both an inter-view section and observational section.Table 1 contains the variablesaddressed by the profile. An adaptationof this tool was designed for parents tocomplete as they became involved withthe selection of the community pro-gram placement.

(2) To provide training to thoseinvolved in the delivery of preschoolspecial education and related servicesto the child within the community earlychildhood programs. This objectiveincluded the assessment, implementa-tion, and evaluation of training compe-tencies unique to each audienceinvolved in the project. The audiencesincluded families, special educationand related services staff, and comi_tu-nity program staff.

Winter /993 39

(3) To provide early childhood spe-c:al education and related services tochildren within an early childhood pro-gram. The project .: t assisted thelocal education agency (LEA) andcommunity program with the actualdesign and delivery of the child's Indi-vidualized Education Program (IEP).The instructional programs were devel-oped through a team process thatincluded both LEA and communityprogram staff. These interventionswere designed to be implemented with-in typical routines and activitiesemphasizing age appropriate activitiesand social interactions.

(4) To evaluate the effects of specialeducation and related services deliv-ered to children in early childhood set-tings. The actual implementation ofspecial education and related servicesin early childhood settings was contin-uously monitored for decision-makingpurposes. As a part of the evaluationdesign, a battery of assessments wasimplemented on both tl-k. children andtheir families. The assessments mea-sured children's developmental status,social and play skills, and level ofengagement within the environment.The parent assessments measured thefamily's perception of their child'sdevelopmental status, their attitudetoward integration and the integratedplacement. and their use of informalsocial support and resource networks.Data were also collected on programand community status during theimplementation of the project.

The assessment results were used toformulate both the instructional objec-tives on the IEP and the type of train-ing to be provided to staff and families.Beside the summative use of these datato describe and measure the partici-pants' progress in the project, theestablishment of a structured assess-ment protocol for families and childrenprovided a model for the special educa-tion staff of the participating LEAs.Table 2 contains a listing of the mea-sures used within the project.

40 ti inter 199.

Evaluation Design for Early Childhood SpecialEducation Community Integration Project

Family Status Child Status Program Status Community Status

DemographicInformation;ExpectationQuestionnaire;Inventory ofSocialSupports;CommunityResourcesChecklist;MinnesotaChildDevelopmentInventory;ConsumerSatisfaction.

DemographicInformation;BattelleDevelopmentalInventory;PreschoolLanguage Scale;EngagementCheck; Type andLocation andFrequency ofSpecial Services.

1. Staff:DemographicSurvey;ExpectationQuestionnaire;Pre/Post Tests:Experience;ConsumerSatisfaction.2. Community Program:Early ChildhoodEnvironment RatingScale; NurserySchool/Day CareProfile.3. LEA:DistrictProfile; ProgramReview.

Administrator'sSurvey (LEA);CommunityProgramSurvey.

(5) To develop policies and proce-dures for local education agencies pro-viding preschool special education andrelated services within communityearly childhood settings. Each LEAthat participated in the project complet-ed a program review. The ProgramReview was an adaptation of the Com-prehensive Program Review developedby the National Early Childhood Tech-nical Assistance System (NEC*TAS ).The Review was designed for use asboth a self-assessment tool for districts.and as an assessment instrument forproject staff in their work with districtpersonnel. This instrument specifiedareas of program policies and proce-dures related to the successful imple-mentation of early childhood specialeducation programs. Ongoing input onpolicy development was also obtainedfrom participating program administra-tors and state agency representatives.

Demonstration ProceduresThe families of preschool age chil-

dren who were eligible for special edu-cation and related services within the

41

participating LEAs were advised of allservice delivery options includingcommunity settings ar part of the Plan-ning and Placement Team and IEPprocess. If a community placementwas recommended by the LEA speciaieducation team (including parents). theCommunity Integration Projectbecame involved with the child.

The first issue the project addressedwith the participating LEA staff andfamily was the identification of a daycare or nursery school appropriate forthe child's needs. To be deemed appro-priate, the program had to meet the fol-lowing criteria: operate under a statelicense: contain a grouping of childrenof the same chronological age as thetarget child: be located within the sametown in which the child resides; heaccessible to adaptive equipment: andbe willing to participate in the project.An environmental inventory was alsoconducted at the site. After a site waschosen, the project staff conducted atraining needs assessment with thefamily, special education staff, and thecommunity early childhood program

OSERSNNews In Print

staff in regard to the child's specialeducation needs. This needs assess-ment provided information from whichboth individual and group training wasdeveloped. A training contract wasthen developed between the LEA andproject staff. The contract delineatedthe content. type, and frequency oftraining and technical assistance whichwere to be provided to support theplacement of the child within the com-munity setting.

The training was provided through avariety of modes depending on thecontent. objective. competencies, andaudience preference. All training wascompetency based, and most occurredthrough activities and on site applica-tions of consultation and teaching tech-niques. In addition, the family trainingcomponent of the project was designedto enable parents to be active partici-pants in the planning of their child'sintegrated program. Project staffserved as consultants and resources tothe families of the children enrolled inthe project.

Once the child began to attend thecommunity program. a number of out-come measures were implemented onthe child, the family, the program, thestaff, and the other children and fami-lies within the setting. Ongoing train-ing and technical assistance weredelivered as specified by the trainingcontracts and ongoing evaluation of thetraining occurred.

The project was committed to ensur-ing that the child participated in allactivities within the community pro-gram with specific educational goalsand objectives incorporated into theseactivities and routines. Support staff,materials. curricula adaptations, and.when appropriate, direct services wereprovided to the community program bythe preschool special education stafftinder project direction. Over time. thespecial education staff provided moreconsultative services to facilitate atransdisciplinary service model andfewer direct services to the communityprogram. Likewise. in most cases the

demonstration project staff modeledintervention techniques to both the spe-cial education and community programstaff, and over time this provision ofdirect service by project staff wasfaded out.

Project ResultsChild Change. During the project.

children were assessed a minimum ofevery six months. During the secondand third years of the project, the chil-dren made statistically significant gainsusing age equivalent scores on alldomains (and the total) on the BattelleDevelopmental Inventory (BDI) (t =6.45: p < .001 for total score), and thePreschool Language Scale (PLS) (t =2.95: p < .01). Since the use of gainscores has been justifiably criticized(Hauser-Cram & Wyngaarten Krauss.1991). Proportional Change Indices(Wolery, 1983) were also computed onthese data. The results suggested amean index of change for the 16 partic-ipating children during year three onthe BDI total score as 1.09 and on thePLS as 1.66. These indices suggest thatthe mean rate of development duringintervention was 1.09 (total) and 1.66(language) greater than the rate ofdevelopment they showed prior tointervention. Additionally, the childrenalso demonstrated an increase in theirtotal engagement scores. In particular.this change reflected an increase in theengagement with peers category and adecrease in the engagement withobjects category. Data were also takenon the types of support provided tochildren within the integrated sites.

Family Change. The families didnot demonstrate statistically significantchange on the Community ResourceLog nor the Inventory of Social Sup-ports. This is not surprising due to thefact that the parents represented agroup of intact (all but two weremarried), well educated (all had gradu-ated from high school, 18 had at leasttwo years of college), and employedindividuals.

42

During participation in the project.the families did demonstrate a slightincrease in use of communityresources. Of greater interest, however,were the responses of the families onthe Inventory of Social Support. Forexample. none of the families used for-mal services as support in such areas ashelp with child care, questions aboutchild rearing, encouragement whenthings get difficult, acceptance of childregardless of behaviors, and fun andrelaxation. The supports consistentlyused for these areas were listed asmyself. spouse. parents. or friends. Theformal support service of early inter-vention was identified by about halfthe families for use in the areas ofhelping with hassles with agencieswhen needs/wants are not met and helpin learning about services. The parentsalso demonstrated an increase in theirpositive responses and a decrease intheir negative responses on the expec-tation questionnaire. Lastly, the par-ents scores for their children on theMinnesota Child Development Inven-tory was highly correlated (r = .88 fortotal scores) to the scores on the pro-fessionally administered assessments(BDI. PLS), when using both rawscores and age equivalent scores forboth individual domains and the total.

Program Change. Selected infor-mation was collected on the earlychildhood community programs thatparticipated in the project. These pro-grams demonstrated significantchanges in their total scores on theEarly Childhood Environmental RatingScale (ECERS) during both year 2 and3 (t = 3.28: p < .008). The participatingLEA programs also demonstratedchanges in policy as documented intheir program review. All programstaff increased their scores on the posi-tive outcome statements on the expec-tation questionnaire. and decreasedtheir scores on negative outcome state-ments. This suggested an overallincrease in positive expectations forchildren as a result of integration.

Winter 1993 41

Community Change. Since theConnecticut Department of MentalRetardation has been providing groupintervention services within communi-ty programs for children birth to threewith disabilities, there has been asteady increase in the number of chil-dren who transition into LEA integrat-ed special education services at three.In 1991. 53 percent of the DMR "grad-uates" of integrated birth to three ser-vices continued to receive special edu-cation services from their schoolsystems in programs that also servednondisabled peers. This number repre-sents an increase from 26 percent fromthe first year (1988) that DMR provid-ed services in community programs (L.Goodman, personal communication,September 18, 1991). Likewise, theConnecticut State Department of Edu-cation has been providing preschoolincentive dollars under P.L. 99-457

(Part B) to districts to ensure a continu-um of available LRE options. Since theinception of this program. there hasbeen a dramatic increase in the numberof preschool age children receivingspecial education in programs alsoserving nondisabled peers (K. Halver-son, personal communication, Novem-ber 12. 1991).

Discussion

The Community Integration Projectwas successful in facilitating the deliv-ery of special education and relatedservices to children with disabilitieswho attended existing communityearly childhood programs. During therefinement of project objectives, fourinterrelated components were identi-fied as necessary to the successfulexpansion of integrated special educa-tion preschool programs. These willeach be separately discussed.

Service Delivery

The implementation of "state of theart" service models for young childrenwith disabilities remains a challenge tomany LEAs. Many of the service inno-vations developed within the past 10

42 It inter /993

years are just beginning to be systemat-ically implemented within early child-hood special education programs.These innovations include team-baseddecision making. cross disciplinaryassessment protocols. IEPs containingage appropriate, functional, transdisci-plinary goals and objectives, instruc-tional programs which are implement-ed within typical early childhoodroutines and activities, the use ofinstructional and assistive technology,and the delivery of related serviceswithin classroom activities. Familyinvolvement within the developmentand delivery of services also remainsan elusive goal for many. Nonetheless.the results of this model demonstrationproject suggested that the delivery ofsuch innovative practices can be aseffectively implemented within inte-grated early childhood settings as with-in segregated settings.

TrainingThe project's main emphasis has

been training. The type of training ini-tially requested by LEA staff consisted

.1...11M

;Or -

of basic early childhood special educa-tion principles and techniques. Oncetraining on these topics was imple-mented, a second emphasis of LEAstaff training focused on team develop-ment and consultation techniques tofacilitate learning activities with thecommunity program. The communityprogram staff requested a thoroughoverview of the legal and programmat-ic components of special education.Families requested training to preparethem to become integral members oftheir child's intervention team.

EvaluationThe evaluation design allowed staff

to implement a battery of measures onchildren, families, and program staff.The collection of this informationallowed project staff the opportunity toshare with LEA staff, families, andcommunity program staff data on anumber of program features thatimpinged on the effective implementa-tion of this model. These featuresincluded the quality of the communityprogram environment, the staff (both

,OSCIO Flews In Print

LEA and community) backgrounds,qualifications, attitudes, and identifiedtraining needs, the families' involve-ment with community resources andinformal support systems, the families'perceptions of their child's needs, theactual delivery (frequency, type, andoutcome) of special education andrelated services, and the effects of sup-port and training activities.

Policies and ProceduresThe initial intake data on the district

profiles suggested that six of the LEAshad policies and procedures for theirpreschool special education programs.However, none had policies and proce-dures on options for the provision ofspecial education and related serviceswithin non-special education settings.All targeted this area as one to focus onduring project implementation.

ConclusionThe experiences of the Community

Integration Project support the deliveryof special education and related serviceto preschool children with disabilitieswithin community early childhood pro-grams. However, there are barriers thatexist within school systems inhibitingthe implementation of such servicedelivery models. These barriers includephilosophy, funding, and training.

Philosophy. Fairly recently, the par-adigm of early intervention has shiftedfrom a stimulation and/or remediationprogram into one which is familydirected, community based, and inte-grated. While components of the oldmodel can be incorporated into thedesign of more responsive systems ofintervention, many have yet to concep-tualize how these new models can beimplemented.

One solution to the philosophicaldilemma may be to shift the earlychildhood special education paradigminto a model of inclusive programmingfor all young children (Salisbury.1991). This model is one which was

embraced by the Community Integra-tion Project, and which was found suc-cessful for the participating childrenand families.

Training. The philosophical shiftrequired by the changing paradigm ofearly childhood special education is theeasiest component of change. Theimplementation phase of this paradigmshift presents many challenges since itrequires an intensive commitment bythe participants to learn new roles. Formany, the training will encompass anew body of knowledge. This willinclude content areas such as the devel-

opment of social competence withinchildren: the design. implementation.and evaluation of functional interven-tion targets taught within normal earlychildhood routines and activities: andcollaborative consultation skills.

A solution to the training issue isthat preservice personnel preparationmodels be updated to include theimplementation of early interventionwithin community settings. Currently,personnel preparation programs reflectcertification requirements covering abroad age range. A second and relatedsolution would be the requirement ofongoing in-service participation uniqueto early childhood for those currentlyproviding services.

Funding. While many in support ofcommunity based integrated earlychildhood special education programsargue the cost effectiveness of this typeof program model, none of our partici-pating districts chose to use cost effec-tiveness as the reason for implement-ing the model. This was summed up bya district administrator in the projectwhen he said. "The issue shouldn't becost per se, but quality in relation tocost. If an integrated model will resultin better child outcomes, we can'tafford not to provide it." i

ReferencesBricker, D.D. (1978). A rationale for

the integration of handicapped and non-

4.4

handicapped preschool children, in M.Guralnick (Ed.). Early intervention andthe integration of handicapped and non-handicapped children (pp. 3-26). Balti-more: University Park Press.

Bruder, M.B., Deiner, P. & Sachs. S.S.(1990). Models of integration through earlyintervention/child care collaborations. Zeroto Three. 10(3), 14-17.

Guralnick, M.J. (1990). Early child-hood mainstreaming. Topics in EarlyChildhood Special Education. 10(2), 1-17.

Hanline, M.F. ( 1990). A consultingmodel for providing integration opportuni-ties for preschool children with disabili-ties. Journal of Early Intervention. 14(4).360-366.

Hauser-Cram. P. & WyngaartenKrauss, M. (1991). Measuring change inchildren and families. Journal of EarlyIntervention. 15(3). 288-297.

McDonnell, A. & Hardman. M.(1988). A synthesis of "best practice"guidelines for early childhood services.Journal of the Division for Early Child-hood. 12(4). 328-341.

McLean, M. & Hanline, M.F. (1990).Providing early intervention services inintegrated environments: Challenges andopportunities for the future.Topics in EarlyChildhood Special Education. 10(2),62-77,

Odom. S.L & McEvoy. M.A. (1990).Mainstreaming at the preschool level:Potential barriers and tasks for the fields.Topics in Early Childhood Special Educa-tion. 10(2). 48-61.

Peck, C.A., Hayden. L., Wandschnei-der. M.. Peterson. K. & Richarz, S.( 1989). Development of integrated pre-schools: A qualitative inquiry into sourcesof resistance among parents. administra-tors, and teachers. Journal of Early Inter-vention. 13(4), 3:)3-363.

Salisbury, C.L. (1991). Mainstreamingduring the early childhood years. Excep-tional Children. 58(2). 146-155.

Strain, P.S. (1990). LRE for preschoolchildren with handicaps: What we know,What we should be doing. Journal forEarly Intervention. 14(4). 291-296.

Templeman. T.P.. Fredericks, LLD. &Udell. T. (1989). Integration of childrenwith moderate and severe handicaps into aday care center. Journal of Early Interven-tion, 13(4). 315-328.

Wolery, M. (1983). Proportional changeindex: An alternative for comparing childchange data. Exceptional Children. 50(2).167-170.

Winter 1993 43

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