DOCUMENT RESUME

ED 318 174 EC 230 576

AUTHOR Anderson, Penny P.; Fenichel, Emily SchragTITLE Serving Culturally Diverse Families of Infants and

Toddlers with Disabilities.INSTITUTION National Center for Clinical Infant Programs,

Washington, DC.SPONS AGENCY Health Resources and Services Administration

(DHHS/PHS), Rockville, MD. Office for Maternal andChild Health Services.

PUB DATE 89

GRANT MCJ-113271NOTE 31p.

PUB TYPE Collected Works - Conference Proceedings (021) --Guides - Non-Classroom Use (055)

EDRS PRICE MF01/PCO2 Plus Postage.DESCRIPTORS Cultural Awareness; *Cultural Differences; *Delivery

Systems; *Disabilities; *Early Intervention; FamilyInvolvement; Infants; Preschool Education; ProgramDevelopment; State Programs; Toddlers

ABSTRACTThis publication emerged from an invitational meeting

held by "Project Zero to Three" to address how best to provideeffective, culturally sensitive, and comprehensive early interventionprograms to all infants and toddlers with disabilities and theirfamilies in an equitable way. Following an overview of the concept ofculture and how that concept may be understood and used by humanservice providers, specific cultural issues are discussed, such asfamily definitions, roles, relationships, and child-rearingtechniques; health, illness, and disability beliefs and traditions;and communication and interactional styles. This information is thenused as a basis for suggesting strategies which states might considerin their efforts to enhance cultural sensitivity in services. Thestrategies focus on data collection, family participation in policymaking and program design, public awareness, working with individualfamilies, staffing, monitoring, and evaluation. Included are a listof 22 references, a list of 33 recommended readings, and descriptionsof resource organizations and projects. (JDD)

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Reproductions supplied by EDRS are the best that can be madefrom the original document.

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U S DEPARTMENT OF EDUCATIONOffice of tducational Research and Improvement

ED CATIONAL RrSOURCES INFORMATIONCENTER (ERIC)

c This dci.urnent has been reproduced etreceive I from the person or orgenration°twitting it

( ` Minor twinges have been made to improvereprodiiction quality

Points of vie* or opinions staled in thirtdOCumen, do not necessarily represent officialOE RI position or policy

ServingCulturally DiverseFamilies of Infantsand Toddlers with

DisabilitiesPenny P. Anderson, MA

Emily Schrag Fenichel, MSW

,..

"PERMISSION TO REPRODUCE . HISMATERIAL HAS BEEN GRANTED BY

,-41%-iJ---

TO THE EDUCATIONAL RESOURCESINFORMAMN CEN TER (ERIC)."

A

Serving CulturallyDiverse Families ofInfants and Toddlerswith Disabilities

Penny P. Anderson, MA

Emily Schrag Fenichel, MSW

tit National Center fox Clinical Infant Programs1989

The National Center for Clinical Infant Programs is anon-profit, tax exempt corporation. It was established in1977 by outstanding representatives from the fields ofmental health, pediatrics, child development, and relatedfields, as well as community leaders, in order to improveand support professional initiatives in infant health,mental health and development. We hope that thispublication will add to the information base of thosewho seek to improve services for all infants and toddlerswith disabilities and at risk of disabilities and theirfamilies.

This publication was supported by project #MCJ-113271 fromthe Maternal and Child Health prolram (title V, SocialSecurity Act), Health Resources and Services Adm;nistration,Department of Health and Human Services.

Copyright 1989 National Center for Clinical InfantPrograms733 15th Street, N.W., Suite 912Washington, D.C. 2(.4)05(202) 347-0308

Contents

4 Foreword

5 Conference Participants

7 Introduction

8 CultureThe All-Encompassing Variable

9 Family and Childrearing, Culturally Defined10 Examples of Family and Childrearing Tendencies in Different Cultural Groups

10 Health, Illness and Disability: Beliefs and Practices11 Examples of Health, Illness and Disability Belief and Practice Tendencies in Different

Cultural Groups

12 Family/Professional Interaction12 Communication

12 Examples of Communication and Interactional Tendencies in Different Cultural Groups

14 State Strategies to Increase Cultural Sensitivity14 A Commitment to Serve All Children

14 Data Collection

15 Family Participation in P dicy Making and Program Design

15 Public Awareness

16 Working with Individual Families

16 Estal lishing Rapport for Planning

16 Assessment

17 Staffing

17 Monitoring and Evaluation

18 Guidelines for Addressing Cultural Diversity Issues in the Context of P.L. 99-457

19 References Cited

20 Resource Programs

20 Oiganizations

23 Projects

28 Recommended Reading

A

4

Foreword

From 1983 until 1989, under a grant from the Bureauof Maternal and Child Health and ResourceDevelopment, U.S. Department of Health and HumanServices, the National Center for Clinical InfantPrograms (NCCIP) provided technical assistance andserved as a forum for information and resourceexchange to fifteen states working to developcomprehensive and coordinated early interventionservices for infants ,^ -1 toddlers with disabilities andtheir families. The fifteen states included in this "ProjectZero to Three" were: Florida, Hawaii, Iowa, Kansas,Maine, Maryland, Massachusetts, New Jersey, NewYork, North Carolina, Ohio, Oregon, Texas, Utah, andWashington.

"Project Zero to Three" was guided by a Core

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Advisory Panel which included several members ofNCCIP's Board of Directors, representatives of federalagencies, individuals with experience directing nationalprojects and providing clinical services, and parents ofyoung children with disabilities. Each year the CoreAdvisory Panel, "Project Zero to Three" staterepresentatives, and resource persons with expertise inrelevant areas attended a national meeting to share andreview their experiences and to identify sere ice gaps andtheoretical issues yet to be addressed. The Project alsobrought together parent 'presentatives from each stateso that they, too, could shi -e their experiences, identifyand begin to address unmet needs, network withparents from oiher states, and keep abreast of relevantstate and federal activities.

Further, small invitational meetings were heldperiodically to provide the states with an opportunity toaddress specific areas of concern. Topical publicationsfrequently were generated as a result of these meetings.This publication emerged from such a gathering. Inresponse to concerns expressed by state representativesan invitational meeting was held in April, 1988, whichaddressed the issue of how best to provide effective,culturally sensitive and comprehensive earl)intervention programs to all infants and toddlers withdisabilities and their families in an equitable way.

We extend special thanks to those who assisted us inplanning for the meeting on "Serving Culturally DiversePopulations of Infants and Toddlers with Disabilities

and their Families"Aaron Favors, Ph.D., Director,MCH Program Coordination and SystemsDevelopment Branch, Office of Maternal and ChildHealth, Bure3i: of Maternal and Child Health andResource Development, U.S. Department of Health andHuman Services; Jane Lin-Fu, M.D., Chief, GeneticsServices Branch, Division of Services for Children withSpecial Health Needs, Office of Maternal and ChildHealth; and Mary Thorngren of the National Coalitionof Hispanic Health and Human Services Organizations(COSSMHO) in Washington, D.C.

Special appreciation is due again to Dr. Favors forintroducing the meeting, and to our speakers, Dr.Lorraine Cole, American Speech, Language and HearingAssociation in Rockville, Maryland; Dr. Richard Roberts,with the Center for Development of Early Education inHonolulu, Hawaii, at 0,e time of meeting (and now withFamily Based Education Centers at Utah StateUniversity in Logan, Utah); and Sister Jo Ellen Shannon,East Coast Migrant Head Start Project in Arlington,Virginia.

We also thank those participants whose expertise infacilitating four issue-specific work groups wasinvaluable to thi. success of the meeting and thus to thedevElopment of this publicationJoyce Lindgren andAndrea Calloway, Co-facilitators, Parent ParticipationWork Group; Emily Vargas Adams and Jane Lin-Fu, Co-facilitators, Cultural Perspectives Work Group; RandiMalach, Facilitator, Assessment Issues Work Group; andRichard Roberts and Elizabeth Uchytil, Co-facilitators,Outreach Work Group.

Finally, we extend our thanks for continuing supportand assistance in all aspects of "Project Zero to Three"to Diana Denboba, Project Director in the Office ofMaternal and Child Health during the Project's finalyear; Kathleen Kirk Bishop, D.S.W., Project Director for"Project Zero to Three" at the time of the meeting;Merle McPherson, M.D., Director of the Division ofServices for Children with Special Health i lerds, Officeof Maternal and Child Health; and Vince Hutchins,M.D., Associate Director for the Office of Maternal andChild Health, Bureau of Maternal and Child Health andResources Development.

ConferenceParticipants(With Affiliations in April, 1988)

Emily Vargas AdamsDirectorCenter for the Development of Nonformal Education, Texas

Penny AndersonResearch AssociateNational Center for Clinical Infant Programs,Washington, DC

Nancee BaileyTechnical Assistant ConsultantDivision of Special EducationMaine Department of Educational and Cultural Services

Julianne BeckettSick Kids Need Involved People, Lowe

Carol BenmanAssociate DirectorNational Center for Clinical Infant Programs,Washington, DC

Kathleen BishopSocial Work Program SpecialistOffice of Maternal and Child HealthU.S. Department of Health and Human Services

John D. BowdenAssociate for Program AnalysisBirth to Six Planning ProjectWashington Department of Social and Health Services

Christine BurtonProgram Specialist, Office of Early InterventionFlorida Department of Education

Andrea CallowayParent RepresentativeOhio Governor's Early Intervention Interagency Council

Lorraine ColeOffice of Minority AffairsAmerican Speech, Language and Hearing Association,Maryland

Jane DeWeerdCoordinatorHead StartAdministration on Children, Youth and FamiliesU.S. Department of Health and Human Services

Linda EggbeeiAssistant Director TASKNational Center for Clinical Infant Programs,Washington, DC

Aaron FavorsChiefProgram Coo. Jination and Systems Development BranchOffice of Maternal and Child HealthU.S. Department of Health and Human Services

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Emily Schr4 FenichelAssociate Dite,torNational Center for Clinical Infant Programs,Washington, DC

Setsu FurunoHo' Opa Ola ProjectChair, Hawaii Interagency 99-457 Coordinating CouncilSusan GellertProgram AdministratorMilestone Child Development CenterHudson Unit (New Jersey) - Association for Retarded CitizensJennifer HaakeDirectorInfant Development ProgramFamily Health ServicesUtah Department of Health

Cindy HirschfeldOhio Early Intervention AdministratorVince HutchinsAssociate DirectorOffice of Maternal and Child HealthU.S. Department of Health and Human ServicesLany LangSocial WorkerBilingual Outreach 'ZenterPrince George's County, Maryland, County He AilDepartment

Joyce LindgrenEarly Childhood SpecialistPACER Center, Inc., Minnesota

Jane Lin-FuActing ChiefGenetics Services BranchOffice of Maternal and Child HealthU.S. Department of Health and Human ServicesNancie LinvilleRussell Development Center, Kansas

Randi MalachProject DirectorEducation for Parents of Indian Children with Special NeedsSouthwest Communication Resources, Inc., New MexicoJewel ManzayAssociate Director, Project EDGEDallas County, Texas, Mental Health and Mental RetardationCenterSue Mc LaurinPhysical Therapy ConsultantNorth Carolina Division of Health ServicesJeanette MisakaClinical Instructor, Special EducationSpecial Education DepartmentUniversity of Utah

Judy Mo lerCoordinator, Coordinating CouncilMaternal and Child HealthKansas Department of Health and Environment

Chikae NishidaActing ChiefHawaii Crippled Children's Services

[)avid PetersProgram SupervisorCherokee-Clay-Graham OfficeDevelopmental Evaluation CenterWestern Carolina University, North CarolinaRichard N. RobertsDirectorCenter for Development of Early EducationPre-Kindergarten Education Program, HawaiiWendell Rol kb- inExecutive Vice PresidentRedlands, Florida, Christian Migrant AssociationSherri RosenProgram Administrator, Early Intervention ProgramChildren's Hospital of New JerseyHector SanchezMulticultural SpecialistHeadstart BureauAdministration on Children, Youth and FamiliesU.S. Department of Health and Human ServicesKaren SandersOhio Department of EducationSister Jo Ellen ShannonEast Coast Migrant Headstact Project, VirginiaNiki SmithRegional ConsultantProjeci COPE, OregonJustine StricklandDirector, East River Child Development Center, New YorkAnne TaylorKennedy-Donovan CenterLewis School, MassachusettsSandra TaylorIowa Department of Human ServicesVirginia TuckerDirector, Medical Services DivisionMaternal and Child HealthKansas Department of Health and EnvironmentElizabeth UchytilAssistant AdministratorChildren's Services DivisionOregon Department of Human ResourcesDebra Von Reml'owResource Development SpecialistInfants and T. idlers ProgramMaryland Oft, e for Children and youthPeggy WagonerAdministrative AssistantEarly Childhood Education ProgramOffice of Special Education ProgramsU.S. Department of EducationAndrea WeissMassachusetts Department of Public HealthDeborah WestvoldIowa Program Planner/EvaluatorLona WilburSwiromish County Birth to Three ProjectTr.bal Council of Swinomish, WashingtonFrank Zo ItoEarly Intervention (oordinatorNew York State Department of Health

Introduction

"Culture," according, to anthropologist John Obgu,"shapes the way of life shared by members of a

population. It is the sociocultural adaptation or designfor living that people have worked out land continue towork outl in the course of their history" (Ogbu 1987:15o, emphasis supplied). As cultures vary, so do notionsof what the human body svmboli7es, how it shouldappear, how it functions most appropriately and why,when and how it should be treated. Conditions whichare viewed as physical, mental or emotionalimpairments, as well as appropriate responses to suchconditions, vary from culture to culture.

There are cultural and situational influences which, if.1noted, may, from the outset, doom to failure even thebest intentioned programs for culturally diverse infantsand toddlers with disabilities and their families. Culturalvariables include, for example, how people feel about,manifest and treat health, illness, and physical, mental,and emotional disabilities; the group of people in one'slife who are considered to be family members and therelationships these people have to each other;childrearing techniques; and language and the differentways in which people communicate. It is important toremember that situational and environmental conditionssuch as poverty, homelessness, lack of formal education,and other factors that put children and families at graverisk are not cultural attributes. These conditions arevariables which cut across all cultures.

This publication is designed to assist policymakers andpractitioners in their efforts to develop programs and

serve familie:, with infants and toddlers with disabilitieswithin the families' own cultural frameworks andindividual lifestyles. The ideas and suggestions in thispublication reflect the available, but scant, literature oncultures and disability; background papers by AliciaLieberman on cultural sensitivity and by PennyAnderson on culture and disability; personalcommunications from members of a variety of culturesand from practitioners who work in various capacitieswith members of diverse cultures; and the professionaland parent participants in NCCIP's Spring, 1988,rneetting on serving culturally diverse populations ofinfants and toddlers with disabilities and their families.

Following an overview of the concept of culture andhow that concept may be understood and used byhuman service providers, some of the specific culturalissues noted above are discussed - - family definitions,roles, relationships and childrearing techniques; health,illness, and disability beliefs and traditions; andcommunication and interactional styles. Thisinformation is then used as a basis for suggestingstrategies which states might consider in their efforts toenhance cultvil sensitivity in services to young childrenwith disabilities and their families.

Information about cultural clusters and any specificcultures, as well as anecdotal materials are provided asexamples only. They must not be construed asautomatically applying to all families within a particularculture.

Serving CulturallyDiverse Families ofInfants and Toddlerswith Disabilities

CultureThe All-Encompassing Variable

Culture can be conceptualized as the specific frameworkof meanings within which a population, individually andas a group, shapes its lifeways. A cultural framework isneither static nor absolute. It is, in a sense, an ongoingprocess, within which individuals are constantlyreworking or trying out new ideas and behaviors.

The cultural framework must be viewed as a set oftendencies of possibilities from which to choose. Toascribe to culture a more deterministic role in the livesof individuals or families results in stereotyping, andstereotyping creates barriers to understanding whichare as impenetrable as those created by culturalignorance. For example, there exists no generic entitywhich may be dubbed "the Southeast Asian family," "theNative American family," or "the European Americanfamily." Each of these categories encompasses numerouscultures; their individual members may share tendenciesin some areas and rot in others. And further, there isno entity which can with authority be called "the

Vietnamese family," the Navajo family," or "the Italianfamily." Individuals and families will be found to liealong different points of their cultural continuums(from traditiona' for example, to fully bicultural). Itcannot be expected that each family and individualwithin a culture will respond in the same way to thesame or similar situations. While this publication isbroadly focused on "Asian Americans," "HispanicAmericans," "African Americans," and "NativeAmericans," these are valid cultural distinctions only inthe very broadest sense of the term.*

Thus, cultural sensitivity cannot mean knowingeverything there is to know about every culture that isrepresented in a population to be served. At its mostbasic level, cultural sensitivity implies, rather, knowledgethat cultural differences as well as similarities exist,along with a refusal to assign values such as better orworse, more or less intelligent, right or wrong tocultural differences; they are simply differences. Forthose involved in early intervention, cultural sensitivity

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further means being aware of the cultures representedin one's state or region, learning about some of thegeneral parameters of those cultures, and realizing thatcultural diversity will affect families' participation inintervention programs. Cultural knowledge helps aprofessional to be aware of possibilities and to be readyto respond appropriately.

It is important for professionals to let family memberstake the lead in revealing their own place within theircultural paradigm. Thus, if a professional knows thatmembers of some cultures avoid eye contact out ofrespect, she or he will not assume that avoidance of eyecontact indicates shyness, ambivalent =-, shiftiness,embarrassment, guilt, or any other "mainstream"associations connected with aversion to "lookingsomecrte in the eye." Such an assumption would beascribing a value based upon a professional's ownculture, rather than based within the context of anyother group. But neither will a culturally sensitiveprofessional assume that all individuals in a culturewhose members tem..; to avoid eye contact will in fact doso. Rather she or he will be aware of the possibility, butwill take the lead of the individuals being served, whoeither will or will not maintain eye contact or will fallsomewhere in bet .veen.

Family and Chiidrearing, Culturally Defined

The concept of what constitutes a family differs fromculture to culture, although all cultures distinguishbetween people who are "related" to each other andthose who are not. The structures of families may varya great deal between cultures, as may relationshipsexpected between family members.

In many cultures, the family is "extended" in variousways. Numerous relative, ant' frequently non-relatives(by mainstream definition) or temporary relatives maycomprise the primary closely knit group. The familymay he for the most part constant, with its changesoccurring consistently through the life events of birth,marriage and death; or it in ,y be somewhat fluid. Forexample, distant kin or note 'cin who are nevertheless

*What is corsidered appropriate terminology for members of thesebroad cultural groupings varies anion. individuals and groups andchanges over tihie as well. The above terminology is based uponcurrent literature, advice, and an attempt to k consistent acrosscultures. "American" is used in this publication only to refer to personsin the Unit Ai States, tecognizing that there are other "Americans" aswell, and, further, tli.it not all of the people residing in the UnitedStates within theici groupings ((Insider themselves to be "Americans"as the hrm is used in this publication

considered to be family members may be more or less apart of the extended family household as situations andrelationships with core members fluctuate. Theextended family may be a person's most importantsupport network, and individuals may also be expectedto make personal sacrifices for the sake of the extendedfamily. Individuals within diverse family structures havevarying roles vis-a-vis each other, and these roles andrelationships may change over time. For example, afamily may have some form of strict hierarchy, with orwithout rigidly defined gender roles, or may be totallyor relatively egalitarian in terms of some or all of itmembers.

Ideas about the process of childrearing are alsoculturally defined. Children are raised in a way thatsocializes them "for optimal adjustment and success intheir home culture" (Westby 1986: 13). Members ofdifferent cultures vary in their ideas about who caresfor and educates children of differing ages and sexes,the expectations of children at different stages ofdevelopment, and the kinds of competence andbehaviors seen as normal or ideal. Child developmc-tresearchers have focused their attention on middle classmainstream children and their mothers (Westl.y 1986),but children in many cultures may be cared for to asignificant extent by their mothers and also by siblings,grandparents, other relatives, neighbors, entire familiesor even entire communities.

If cultural norms or ideals require that childrenbecome competent in areas other than those needed inthe social mainstream, childrearing methods andoutcomes may vary as well (Ogbu 1987). Practices thatseem incomprehensible to uninformed persons fromother cultures may make perfect sense in the context ofthe culture itself. Stack (1974) notes, for example, that,contrary to the impression frequently left by studies ofpoor African American families, their system of sharedchildcare and parenting arrangements is not indicativeof disorganized, haphazard, uncaring or broken familylife. This kinship interaction, which intertwines asystem of life-sustaining exchanges of goods andservices, in fact reflects a creative form of adaptation topoverty which enables those concerned to survive underextremely difficult circumstances. But it is riot aphenomenon restricted to poor African Americanfamilies. While the constant exchange found amongextremely poor African American families may lessen asfamilies climb the socioeconomic ladder, McAdoo (1979)and others have found that members of the AfricanAmerican middle class do tend to maintain mutuallysupporting family and kin networks. This makes suchsupport appear to kx a cultural tendency rather thanstrictly an adaptation to poverty.

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Some examples of family structures and childreaiingtendencies in different cultural groups suggest both thevariety of patterns and their internal cohesiveness.Again, the reader is cautioned to use these examples asa guide to inquiry only. Cultural frameworks suggestimportant tendencies and possibilities; an individual orfamily's unique characteristics and experiences must alsobe understood.

Examples of Family and Childrearing Tendenciesin Different Cultural Groups

An Asian American gamily may function via a strictgender, sibling, and age hierarchy. In this hierarchy,fathers may hold a traditional leadership role, withmothers functioning as family nurturers and caretakers,in subt*ssion to their husbands, with their youngermale.childeen submissive to olde:- stale children, andfemale child-en submissive to all. Traditional Asianfamilies tend to be extended, with families very closeand with many generations often living under one roof.Children may be strictly controlled and physicallypunished. Asian American parents generally take veryactive roles in augmenting and encouraging theirc'cnidreit's learning activities at'home (Lin-FuHowever, where language and cultural barriers are inplace, family members may be reluctant to attend PTAand other school functions.

An African American family may also be extended,with loyalty to the extended family encouraged ;naddition to independence and assertiveness. Mothersand grandmothers are traditionally central influences onyoung children, but the current prevalence of femaleheaded households has raised serious concerns amongAfrican Americans about how to support fatherIchildrelationships. Children tend to be the focus of AfricanAmerican families. IN Ilk, infants :ire nurtured warml,.and affectionately, concern about "spoiling" babies mayalso be expressed. African American families have a

strong belief in disciplining inappropriate behavior inchildren. The discipline administered may range from an"evil eye" (which conveys to the child that it is time tostop a behavior immediately), to threatening to punkh,to "spanking" (Anglo terminology) or "beating" (AfricanAmerican terminology) (Strickland 108o).

Members of Hispanic American families may alsoidentify themselves fir .t and primarily as members oftheir extended families. In patriarchal Hispanic families,the attitude of ma(-1/i.,4?4, may he an imp(h tont force. Inan Hispanic American family 'olds to refer to ahusbandlfathir's ultimate responsibility Fot- the Care andWell-being of his family, without tilt, negativeconnotations the term has taken 011 elsewhere. Thus, it

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may be appropriate for a husband to make decisionswithout consulting his wife, although a woman may beexpected to consult with her husband and other familymembers before making similar decisions. Children mayhe expected shot ily after marriage, with pregnancy andchildbirth often seen as natural events needing nomedical supervision or intervention under ordinarycircumstances. Infants tend to be the center of uncriticalattention, but toddlers are expected to begin to learnacceptable behavior.

In Native American cultures, the extended familymay also be the primary soui-:,e of support and Identity.In a number of tribal cultures, grandparents and elderstraditionally exert a powerful influence over their adultchildren and the raising of grandciddren. Traditionalfamilies may also designate a member to serve asspokesperson for their group to outsiders. All familymembers are likely to help with childrearing. NativeAmerican children tend to be treated with respect fortheir innate characteristics, which are believed to bepermanent; there is to'tTance for mistakes, with censureand punishment minimal.

Health, Illness, and Disability: Beliefs andPradicel

Culture shapes beliefs and practices concerning health,disease, and disability. Our basic definitions ofdisabilities are cultural constructs, as are the deepermeanings we assign to disabilities. Responses todisabilities and to people with disabilities are culturallyshaped as well. Some people with specific disabilitiesorisider themselves to be members of a culture byvirtue of their disability ( although within the group thedisability is not viewed as such,. This is especially true,for example, of many persons yvitli severe hearingimpairments or deafness. As ilways, variations in beliefsand behaviors are found both within and betweencultures.

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Examples of health illness and disability beliefand practice tendencies in different culturalgroups

While little has been written about conceptssurrounding disabilities and handicapping conditionsamong Asian American populations, Nguyen (1987)reports that birth defects and othcr disabilities may beviewed as ounishments for sins committed not only byparents but by more remote (incest( 's as well. Thefamilies of infants born with disabilities may resist initialintervention efforts; in Buddhist families, for example, ifsuch a child should die, she or he may he reincarnated ina more "whole"' form (Biro 1989).

It may also he believed that unborn children ce.n heharmed if a pregnant woman fails to avoid places andsituations where evil spirits may be lurking. To theextent that a child's defect may represent a punishment,the child may be isolated from society and considered anobject of shame for his or her family.

Little, if anything, has been writ' about AfricanAmerican families in terms of disabilities andhandicapping conditions. There have been efforts,however, to look at the general health and illnessbehaviors of this population in cultural terms. Bailey, forexample, notes that health education programs willmore closely match the needs and gain attention ofAfrican Americans if such cultural traits as "sharing,strong emphasis on family bonding and childrearing, astrong authority structure, the importance ofspiritualism, an emphasis on present orientation, trust,and individual moral 'strength"' are recognized andincorporated (1987: 390).

Hispanic American families tend to prize vitality andhealth and may place the responsibility for care on theentire family. Thus, including the family is oftenessential in both health service provision and inpreventive education (National Coalition of HispanicHealth and Human Services Organizations 1988).

In families where health and vitality are especiallyvalued, an infant or a child with a disability may behidden and thereby deprived of treatment. HispanicAmerican beliefs surroonding di.tability may be stronglyintertwined with religion, v.-thi.1 which a child'sdisability may be perceived as punishment for a parent'swrongdoing. Samora (1978), for example, notes ticbelief that making unfounded accusations about anothermay cause one's own child to he horn with physic aldisabilities. On the ot 1 er han,I, however, malevolentforces may cause seven' or chi onic health problems forno reason at Ali. l'he of such treatmentmay be passive anti indidged by family members andfriends. The victim may hilly expect to be cared tot

without having to participate actively in her or his owncare at all (National Coalition of Hispanic Health andHuman Services Organizations 1988).

In most Native American cultures, health andreligious beliefs are intert' it with parental behavioroften seen as causally linked to birth defects or disease.Among the Hopi, a pregnant woman who breaks ataboo against cruelty to animals, marrying into her ownclan, adultery, quarreling, fishing andlor swimming maynot be living the "Hopi Way" and thus may lose spiritualprotection for her fetus. Pregnant Crow women arediscouraged from looking at anything deformed or at acorpse, lest the vision "show up" on the child (Farris1978: 28).

As nuts .1, different disabilities may cause differentlevels of concern in different cultures. For example,congenital hip dislocation, common among Navajos, hastraditionally been viewed as little cause for concern. Butbecause epilepsy has traditionally been seen asoriginating in sibling incest, this condition may beregarded with great dismay. Traditional Navajos maytend to isolate their children with epilepsy, whether ornot meiication is used. Less traditional Navajos tend touse medication to control their child's epilepsy in orderthat the child may be able to participate more fully incommunity life (see, fur example, Kunitz

Attitude's surrounding disabilities in general, as wellas sivcific conditions, change over time. locust (1980),for example, reports that traditionally the Hopi haveintegrated people with handicaps into their society, withresponsibilities (ommensurate ith their abilities.I however, -,,xposure to mainstream culkore has broughtwith it exposure to the stigmas that may be attached to

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di abilites.

Family/Professional Interaction

An infant or toddler with a disability can create stress inany family. If professionals wish to all vidte rather thanexacerbate that stress, they need to understand howhelp may be sought and used in a culture, the patternsof communication between family members and others,and families' perceptions of professionals.

Practitioners and program developers concerned withinfants and toddlers with or at risk of developingdisabilities would do well to remember how difficult"early intervention" can be to explain even tomainstream professionals and parents. Specializedhealers and teachers can be found in most cultures. Butin many cultures it is members of the extended familywho are "case managers" or "home visitors" who givechildrearing advice. Would-be helpers need to rememberthat members of a family who have limited familiaritywith a professional's ordinary English may be utterlyconfused by professional jargon. If family caregivers donot understand what is being asked of them or theirchild, professional "help" can be damaging rather thanbeneficial. Family members must not be put into a

position of choosing between traditional healing andhelping practices and mainstream programs which theymay or may not understand, agree with or value.Rather, efforts should be made to integrate mainstreamand traditional approaches when a family so desires.

Communication

Communication is the essence of parent/professionalinteraction. Spoken language, body language, and otherforms of communication have important----andvarying----cultural meanings.

Members of some cultures simply will not go tofacilities unless a number of speakers of their ownlanguage can be found there. Ideally, service providerswill understand and be articulate in a client's culture andlanguage (including the languages of sign). When use ofinterpreters is unavoidable, ;t is essential that they arewell-trained, skilled professionals wb .) are able to makeconceptual transfers, including trans ers of idiomaticusages and meanings of intonation, and nt t just literaltranslations of spoken or signed words. Especially in a

clinical setting an interpreter must know the techni, alconcepts involved in both languages, and must be ableto change them into terms that botli the client and theprofessional will understand.

Body language .and other forms of communication an'important considerations in addition to spoken or signedlanguages. IVIenihers of diffei cot cultures may, for

('"n1Plu, have varYing cull( pt s "personal space,"preferring to sit or stand closer to or farthci. from

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others than a professional is accustomed to doing.Members of different cultures have different ideasAbout the meaning of direct eye contact; in somecultures prolonged eye contact may be a sign ofdisrespect. Touching has different meanings in differentcultures as well. in some, to touch a client may beoffensive, especially a client of the opposite sex. In other,for example Hispanic, cultures touch may be a commonform of non-verbal communication.

Varying cultural concepts of time can present majorbarriers to effective parent/professional interaction andcollaboration if not understood or respected. Heavilyscheduled mainstream professionals may see lack of"punctuality" as evidence of hostility or backwardness inpeople for whom the notion of punctuality itself mayhave a cultural meaning quite different from that of a

professional. The same professional, on the other hand,may expec:- family members to share intimate feelingson the briefest of acquaintance, while for members ofthe family's culture trust is something to be establishedslowly.

Examples of communication and interactionaltendencies in different cultural groups

Many Southeast Asian Families refuse to visitfacilities in which they have experienced, or have heardfrom others that they will likely experience,discriminatory and disrespectful treatment by any

person, including reception staff (Nguyen 1987). Thisunderscores the need to edi.: Ate all staff members incultural awareness and sensitivity.

Respect for authority and for age in Asian culturesshould be given consideration in provider/clientinteraction. Asking questions of persons in authority(e.g., health care providers) may he considereddisrespectful, and patients who do not fully understandinstructions may not ask for clarification. Healthprofessionals should be sensitive to the fact that patientsand clients who are older expect to be treated withrespect. For example, in addressing an extend( dthe oldest member should be addressed first. Thatperson may, in fact, hold the key decision-makingposition in the family (Lin Fu

Asian American families may also see dress asreflecting the degree of respect accorded one person byanother. Thus a home visitor who dresses casually,either thinking to put a family at ease or simply becauseshe or he will he sitting on the floor with a toddler, rriaybe perceived by family members as showing contemptor lock of respect. Direct eye contact may be consideredextremely rude. An Indochine:c. American client'sresponse of 'yes' to a ,.uggestioni, idea or programoutline may actually mean simply, "Yes, I heard you"

Indochinese more likely say 'Yes, I agree,' if they do infact agree (Texas Department of Human Services).

African American families have experienceddiscrimination and disrespect in numerous forms, manyof which hearken back to the treatment of AfricanAmericans as slaves. Even today, an African Americanmay be denied the overt symbol of respect conveyed bybeing addressed by his or her appropriate title---Ms.,Mr., Mrs., Miss, or Dr. Africa i American social workershave also noted that mainstream professionals oftenhave inappropriately low expectations for AfricanAmericans as clients or students (Jenkirs, 1981) -acovert but serious barrier to full communication.Blendon et al. (1989), reporting on a 198b surveycomparing Black and white access to and use of healthcare, found that while the financial circumstances andunder- or uninsured status of many Black Americansmakes them less likely to have access to health careservices than whites, even Black Americans above thepoverty line were found to have less access to healthcare than their white counterparts, with "the careprovided differlingi for blacks and whites along anumber of dimensions" (1.989: 280). Longer waits (overa half hour) to see physicians ware reported by Blacksthan were reported by whiteF. In general the studyfound Black Americans less satisfied than whites withthe health care they received.

Hispanic American clients may be :nore presentoriented than the potentially more future orientedmainstream professional, and may be impatient withattempts at long-term planning (Kunce 1983). This iscertainly true if the planning is done for them ratherthan with their consent and agreement. In working withany culture, professionals must remain cognizant of thefact that long-term planning must be carried out inpartnership with the family (Strickland 1989).

Establishment of a personal relationship may be vitalto serving a Hispanic American family, necessitatingdevotion of considerable time to establishing anatmosphere of trust and openness (LiPberman 1987).Many Hispanic Americans will expect health providersto "be warm, friendly, and personalto take an activerole in the patient's life" (National Coalition of I lispanicHealth and Human Services Organizations 1988: 74),and will expect to establish and maintain a relationshipwith specific provid,Ts, not prov. lers' institutions. Atthe same time, however, until an individual indicatesthat less airmal communication is appropriate, use offormal titles with Hispanic American adults is ex hemelyimportant as an indication of respect.

Native American parents ten,1 to judge protessionalbsi Iv. As a Navajo tribal chairperson has put it, "WeNavajos will look you over for a couple of years, and

then decide if we are for you or against you" (in Polacca19ro:1). If service program staff change frequently, noone may be able to establish enough trust to workeffectively with families. Time can be an issue evenwhen trust has been established. Because parents frommany Southwest Native American cultures have beentaught to respect and defer to the perceived needs ofpeople in authority, they may not discuss their concernsif they feel that a doctor or educator is in a hurry.Professionals therefore may need to be sure to planenough time with Native American families so thatfamily members do not feel rushed and will feel free tovoice their concerns (Education for Parents of IndianChildren with Special Needs (EPICS) 1989).

tie

f Irrn

13

State Strategies to Increase Cultural Sensitivity

Working within and respecting a family andcommunity's cultural paradigm may mean thedifference between successful and unsuccessful earlyintervention programs. Several overarching principlesoffer useful guidelines for more specific strategies. Bothprinciples and strategies emerged from the NCCIPMulticultural Meeting held in April, 1988; from thebackground papers prepared for the meeting; from theliterature; from panels and workshops whoseparticipants addressed issues of cultural sensitivity; andfrom the experience and background of NCCIP staff.

Recognition and understanding of culturalparadigms is vitally important. At the same time, theseparadigms must be viewed as broadly comprised ofcultural tendencies which individual families may accerdeny, modify, or exhibit situationally. Attempting toforce a family or an individual to fit within anypreconceived cultural model is not cultural sensitivityitis stereotyping, and stereotyping must beconscientiously avoided.

The principle that parents are the constants in theirchildren's lives and the chief decisionmakers abo,,t allaspects of childrearing may need to be expanded so thatall relevant family members (culturally defined) areconsidered and encouraged to be full partn.Ts in theearly intervention process when primary ,,:areg:vm sodesire. Families should tm., recognized as 0.1! sourc.: rfrelevant and unique perspective and insights regardingtheir own children and their cu.'Eures.

Cultural errors will be Llienating if clients knowthat professionals, pa rtyri,A ssionals, other staffmembers, and volunteers are committed and sincere intheir efforts to provide services to them in a culturallyacceptable and appropriate manner. A professionalshould demonstrate that she or he is willing, indeedanxious, to learn from the family and community asmuch as he or she is willing to give of professionalexpertise.

The specific strategies described below are likelythemselves to increase the appropi lateness of efforts toserve culturally diverse families whmse infants andtoddlers have disabilities. consideration and/orimplementation of these strategies may also stimulatethe commitment to provide additional creative stateresponses to the challenge of serving children andfamilies from culturally diverse backgrounds.

A Commitment to Serve All Chi' iren

A state can demoristrate it' commitment h) ,wrvitysystem that will reach of its infants and s with

I4

disabilities and their families by ,l,:veloping, circulating,and publicizing a statement of that commitment. Thiseffort may help to establish credibility with populationstraditionally under- or unserved in many maternal andchild healthIchildren with special health needs serviceareas. The statement of intent or commitment shouldbe printed in all state-relevant languages, and should bedisseminated through foreign language newspapers,television and radio stations and other media. Smalllanguage groups should not be ignored, since they maybe the least likely ultimately to be aware of services.

Data Collection

In order to serve all infants and toddlers with disabilitiesin a state, planners need to know

the names and geographic locations of families whomay need services and their race and ethnicity, includingwhat specific cultures are represented (not simply"Hispanic," "Native American," etc.);

the types and severity of disabilities the childrenhave, as well as health needs documented as puttingchildren at risk for disabilities which may be prevalent incertain cultural groups (in order that preventionactivities may be considered);

what cultural tendencies surrounding disabilities,childrearing, family roles and relationships, andcommunication styles may be in place; and

what situational variables, such as socioeconomicstatus, geographic location and resultant resourceavailability, and residential stability must be taken intoaccount.

This kind of information gathering requires bothprofessionals trained in statistical and survey datacollection and professionals trained in appliedethnographic fieldwork in the various settings to bestudied. Statistical and ethnographic studies shoulucover all cultural populations, including all Anglopopulations, focusing on the issues noted above--familyroles and relationships, childrearing methods,communication styles, manner of accessing the healthcare system, and cultural beliefs and tendenciessurrounding disabilities and chronic illnesses. Relevantstate agencies, service facilities (including hospitals), andother resources should be covered in the data collectionprocess as well. Once gathered, such information can bemeshed to form a fairly complete pi( tun., in terms ofthe issues to be addressed, of the various populationsand differently t~prised and functioningadinistrations and agencies in the ',fate, all of whichwill be working to ;ether to at hieve hest outyonws for

infants and toddlers with disabilities and their families.The goal is to paint as broad a picture as possible andnecessary of who and what might be involved indeveloping, implementing, and accessing a culturallysensitive program or system of services. One-timeassessments, no matter how extensive, are of limitedusefulness; data collection should be ongoing so thatprograms are kept up to date and in touch with culturalshifts and tendencies within the state. In addition toassessing aspects of cultural diversity and the need forservices, states should identify and compile informationabout existing cost-effective and culturally derivedprogram models.

Family Participation in Policy Making andProgram Design

Policy statements regarding the importance of familyparticipation in policy making and program designsurrounding early intervention programs should beexplicit, including the statement that this participationmust include the active involvement of caregivers fromthe diversity of cultures served. There should be ampleopportunities and support for families from thesecultures to become meaningfully involved in planning,decision making and implementation in all areas at boththe state and local levelsfor example as members ofBoards of Directors, Pl. 90-457 InteragencyCoordinating Councils and other advisory committees;as staff and volunteer trainers, including participating incurriculum development; as staff, volunteers, datacollectors and analysts; and as program evaluators. Toensure that such opportunitie are available theproportion of such positions which are held bycaregivers of children with disabilities, and whetherthese caregivers reflect the cultural diversity of thestate/community should be scrutinized. To be effective,family and cultural representatives in these positionsmust have the authority to represent the various bodiesin which they play a role in order that they maymeaningfully participate in a variety of policy-makingsettings. Specific strategies should be developed tr. assistfamily members of diverse cultures in their efforts tocarry out their roles in state planning and programimplementation by providing, for example, flexiblemeeting times and locations, training based on needsindicated by families, finantial reimbursement (travel,per diem, childcare, free parking, other perks). Finally,recommendations should ht. actively song it from clientfamilies about ways in which they might better beserved.

Public Awareness

An extensive and creative public awarenesss programshould be developed to assure that as many families aspossible who are in need of services will know of theiravailability. Public awareness efforts should

clearly define target populations (both by race andethnicity, disability and culture); and

develop contacts with community groups,community leaders, members of families with childrenwith disabilities, and adults with disabilities in order toplan appropriate outreach and establish networks forcommunication and problem solving.

Publicity about screening, assessment. and earlyintervention services should be developed in all relevantlanguages, .vith input from membQrs of each cultureand language group represented in the state in order tobe appropriate for each one. All materials should bereviewed for cultural appropriateness in terms ofcontent, language, and artwork. Where members of thecommunity have agreed and have been trained to serveas points of initial client contact, their phone number(s)and address(es) should be prominently displayed onpublicity materials for the various cultures. Where thishas not :)ccurred, a number and address should bedisplayed from which first time clients can obtain areferral to community contacts who may serve as theirfirst links with an early intervention system.

Materials should stress in a dear and straightforwardway any special services which may ease entrance intothe early intervention process, e.g., the availability oftrained interpreters, childcare assistance in variousforms, transportation, flexibility in service locations andhours, and so forth. Written informational materialsshould be posted and/or distributed wherever theymight be seen by parents, other family members, orfriends of families with an infant or toddler with specialneeds. Such places might include health facilities (e.g.,hospitals, physicians' offices, clinics, group healthoffices); public facilities (community centers, libraries);local businesses (grocery stores, drugstores,laundromats); settings where children are cared for(childcare centers, preschools, Head Start programs,family daycare homes, schools); and places of worship.Other informational outlets include hical new3papers,newsletters and other publications, including ethnicpublications.

Another extremely important source of informationexchange is word of nitiuth. limited literacy may mokeit difficult or impossible for some family members totake advantage of materials written in any language.Further, there is a strong oral tradition with somecultures, which makes oral commdnication a more

l5

culturally appropriate and effective means of informingfamilies about existing services. Forums may includeadvocacy groups, Native American Tribal Councils,shelters for abused or homeless women and children,hotlines, warmlines (informal, informationallcounselingservices), and PTA meetings, through all of whichreferrals might be made based on the informationreceived. Public service announcements can be aired onforeign language radio and television stations.Announcements may be made in places of worship andother community forums, Culturally appropriatevideotapes using native speakers may be effective aswell.

Working with Individual Families

As noted, it is vital to remember that ultimately servicesare being provided to individual families, and that familyservice plans must address each family's cultural andsituational goals, which include their aspirations forthemselves and their child(ren).

Establishing Rapport for Planning

The first priority in working with a family with a youngchild with a disability is to reach and establish rapportand trust with that family. Previously gatheredethnographic information, as well as the currentliterature, should provide insights into how this mightbest be achieved.

Personnel then must determine

Position on cultural continuum: Where does an individualfamily lie along its cultural continuum, including, forexample, how is the family organized (extended ornuclear)? Who are the primary caregivers? What is thefamily pattern of decision making? What language isspoken at home? Does the family wish to includetraditional practitioners or other members of thecommunity in program planning and/orimplementation?

Values: What values are shared with the Anglomainstream? What aspects of working with the Anglomainstream may be difficult?

Comfortable ways of wor(ing: What is the mostcomfortable way for the family to work with the serviceprovision "system"? and

Additional ;nformation: Is there any other informationwhich is important for personnel to know regarding theindividual family and child and /or that is important tothe family to relate or to question?

Every attempt should be made fully to involve everyfamily in the development of its own service plan,recognizing, however, that some (or even all) services

16

may be unwelcome in some families or that it may taketime for services and service personnel to be accepted.Some serv:. cc or interventions may be perceived ascreating rqlturally related difficulties than a child'sdisability itself. Professionals must be flexible and mustbe able to consider the interplay of the biases anddesires of everyone involved. They must be willtog torethink their professional positions and the types ofintervention which they may strongly believe arenecessary, as well as their means of relating thisinformation to a family.

Assessment

Developmental assessment must be viewed as anongoing process that is an integral part of the familyservice program which recognizes changes in the childand family. The first steps in the assessment processare: determining the family's priorities and theinformation the family wants to have about its child;determining the aspects of their family life which thefamily finds relevant to their child's development; anddetermining what language(s) should be usedthroughout the assessment process. Only then can thefocus encompass actual characteristics of the child anddiagnostic concerns (Johnson et al. 1989: 33). Familyvalues and decisions must be respected.

The assessment process should encourage the use ofa variety of tools and procedures, including behavioralobservation and interviews. Adaptability to culturaldiversity should be used as one criterion for choosingassessment instruments or tools. Assessment materialsshould be carefully scrutinized by culturally awareprofessionals, family members, community leaders, andother relevant persons to ensure that they are free fromethnocentric bias. When deemed necessary, assessmenttools should be reworked to ensure their culturalvalidity. Families are likely to be able to provide morecomplete and accurate data for some portions of anevaluation better than that which is derived via a formalevaluation instrument.

Examiners must be sensitive to and knowledgeableabout the cultures of the children being assessed, andideally will be members of the children's culturesthemselves. At the very least, there should be on theassessment team a person who is biculturallbilingualand is a trained, experienced, and skilled interpreter, able to

converse with the child (depending upon the child's age)and relate to the child and the family in their ownlanguage. This person must be able to interpretassessment issues accurately to both family andprofessionals and to appropriately convey referralinformation and explanations to the family in a clear,non-threatening and respectful way. Follow-through on

referrals should be carried out in the same manner.The state should develop a plan to coordinate existing

financial resources and to allocate additional financialresources to support a culturally sensitive childdevelopmental assessment and referral process. In the;mg run, this should save considerable time andexpense by reducing the likelihood of implementinginadequate or unacceptable assessment procedures withequally unacceptable or incomprehensible outcomes insome families in cultures other than the Anglo

mdAstream.

Staffing

All personnel involved in the planning, administrationor provision of early intervention services for culturallydiverse infants and toddlers with disabilities and theirfamilies need cultural sensitivity training. Pre-servicetraining in cultural sensitivity should be activelypromoted in colleges and universitie.;, and in-servicetraining for all staff not previously trained should berequired (with plans in place for training new staff asthey arrive). Staff in-service training should includeopportunities to attend relevant seminars andworkshops which will continue their cultural sensitivityand knowledge training. Monolingual staff should alsobe encouraged (and perhaps provided with incentivessuch as tuition assistance and/or time off) to learn asecond language.

In-service staff training and development programscan include written, visual, and oral materials andtechniques. Members of a state's cultural communities,including parents or other family members withchildren with disabilities, community leaders and adultswith disabilities, should play a major role ii thedevelopment of training materials and in actual training.Training sessions may be designed to

increase staff awareness of the importance ofcultural sensitivity in working with families of culturesdifferent from their own;

present cultural information collected about thepopulations in the state as well as descriptions of modelprograms and other helpful resources (with stress onthe importance of stereotype aviiidance and respect offamily individuality within cultural paradigms);

teach techniques for increasing cultural self-assessment and awareness; and

offer opportunities for role playing and feedback.

After such training, meetings should regularly be heldduring which staff can raise questions, discuss problemsand receive feedback. Parents and other resourcepersons from the communities should take part in theseevents, regularly and/or to discuss specific topics.

A multicultural resource library (which also includesgeneral informational materials about families anddisabilities, familylprofessional partnerships, and soforth) can be helpful to personnel, parents and otherfamily members, and members of the community atlarge. Where such a resource is developed, staff, familyand other community members should be made awareof its availability. Access should be as convenient aspossible.

Training for family and community members in theircommunities would enhance mutual understandingbetween families and professionals, and effective serviceprovision as well. Sessions might explore differences inperspective which community members may encounterin working with administrative or service personnel, and

ways in which they can deal with cultural ignorance orinsensitivity.

State agencies and early intervention programsserving infants, toddlers and their families should lookat the organizational information collected in theirsurveys and determine their needs for active outreachto find and involve members of cultures represented inthe state at all levels of staffing. Hiring and promotionpolicies should clearly state that recruitment andpromotion of members of the state's culturalcommunities is a priority at all levels (But, members ofparticular cultures should not be hired with the notionthat they will solely serve members of their owncultures.) The resulting diversity will not only enrichthe programs affected, but will enhance state andprovider credibility vis-a-vis traditionally under- orunserved populations.

Well-trained interpreters (paid, volunteer, or both)should be available for speakers of all languages in thestate (including all sign languages), so that no clientfamily or potential client family will be without servicesor access to administrative or program personnel at anyiime due to a language barrier.

Monitoring and Evaluation

The effectiveness and sensitivity of all resources towhich clients are connected should be carefully andthoroughly monitored by outside professionals trainedin cultural diversity issues as well as in earlyintervention and may require the services of a well-trained interpreter as well. Monitoring reassures clientsof the ongoing interest and concern of programadminiAratorsmd helps to ensure .hat client familiesare not lost to the system due to inadequate orinsensitive service provision.

Process evaluations of individual family programsshould he carried out on a regular and ongoing basis toensure that a program is addressing all of family's

17

needs, including specific cultural needs. This helps toensure that necessary modifications can occurpromptlybefore a family begins to feel isolated oralienated from the program.

Formal and informal evaluations by families servedshould be solicited (anonymously if so desired byfamilies) and utilized as part of ongoing programevaluation.

Guidelines for Addressing Cultural DiversityIssues in the Context of P.L. 99-457

State policymakers may initially want to appoint a taskforce or committee of the Interagency CoordinatingCouncil or other body to begin to explore some of theissues and suggestions outlined in this document, aswell as additional state-specific issues which will arise.Following are some very broad questions which such a

group may find useful to address in beginning tograpple with the definition, development,implementation, and evaluation of a statewide, state-specific, culturally sensitive service delivery program forinfants and toddlers with disabilities and their families.

1. How will we reach an agreed-upon definition ofcultural sensitivity (and what a "culture" is), as well asagreement about what we anticipate may be the kindsof cultural issues or tendencies with which we shouldbecome familiar?

2. ( 'iven that developing and implementing aculturally sensitive progran, may take a considerablecommitment of funds, what sources----federal, state andlocal; public ld privatecan we begin to explore andtap into for this purpose?

3. How can we best carry out an assessment of thestate populationdemographic and ethnographic -andbegin to establish liaisons within the state's culturalcommunities? What data and mechanisms already existwhich may be useful in this regard?

4. How can cultural sensitivity training for students,service providers, and state agency personnel mostefficiently and effectively be developed and integratedinto current staffing and educational requirements?

5. How will we attract and retain paid personnel andvolunteers from the cultures represented in our state topositions at all levels of the planning, administration,implementation, ind evaluation process?

With these kinds of issues explored and addressed,state personnel should be in a position actively andquickly to begin to move toward establishing programsto meet the needs of all infants and toddlers withdisabilities and their families in the state.

The effectiveness of programs to provide services formulticultural populations of infants and toddlers withdisabilities and their families rests heavily upon thesensitivity, understanding, and respect paid to thespecific cultural, familial, and individual diversityinvolved. Thus, if comprehensive family. centeredcommunity-based early intervention for all infants andtoddlers with disabilities is to be achieved, culturalawareness and sensitivity must be stated as a priority atthe outset. (i(xxi intentions alone v'ill not achieveculturally appropriate services for culturally diverseyoung children with disabilities and their families;commitment, creativity, openness to fleW ideas, andresources are needvd b.. make such a vision a reality.

References CitedBailey, Eric, 1087Sociocultural Factors and lealth (.are-Seeking Behavior Among BlackAmericans. Journal 111 the National Medical Association 79 (4):380-302.

Biro, Patti, 1080Personal Correspondence.

Blendon, Robert, Linda Aiken, Howard Freeman, and ChristopherCorey, 1080Access to Medical Care for Black a rid White Americans: A Matter ofContinuing Concern. journal of the American Modieal Association 201 (2):278-281.

Education for Parents of Indian (..hildren with Srcial Needs (EPICS),a Project of Southwest Communication Resciurces, Inc., 1080EPICS Talks to Special Educators in Denver. The EPIC.S Messnge.January. Bernalillo, NM: Education for Parents of Indian Ch:idrenwith Special Needs (Southwest Communication Resource Inc., P.O.Box 788, Bernalillo, NM 87004).

Farris, Lorene, 1078The American Indian. In CultureiChadbearinsillealth ProtOssionals. Ann I..Clark, ed. Pp. 20-33. Philadelphia: V.A. Davis Co.

Jenkins, Shirley, 1081The Ethnic Dilemma in Social Services. NY: The Free Press.

Johnson, Beverly, Mary McGonigel, and Roxane Kaufman, eds., 1080Guidelines and Recommended Practices for the Individualized Family Service Plan.

Washington, IX:: Association for the C ire of Children'. Health,

Kunce, Joseph, 1083The Mcriarn-Amricrin: Cross Cultural Rehabilitation Counsel* Implicattorq.Final Report of World Rehabilitation Fund Grant No. (008 103082.May e.

Kunitz, Stephen, 1083Disease Change and the Role of Medicine: The Navajo Experience. Berkeley:

University of California Press.

Lieberman, Alicia, 1087What is Culturally .titmitin InIrrmition' Paper presented at the NationalTraining Institute of the National Center for Clinical Infant Programs,Washington, DC. December.

Lin-Fu, lane, 1080Personal Corresivnelence.

Locust, Carol, 101,oIli RIMS Ab0141 I 1r:iodine, and Ilaridhan.. Tin son, A7: Natty,' American

Research and Ti aming Center, University of Arizona.

McAdoo, Harriette, 1070Black Kinship. Itsycholo. 10day. May: e7-1 I Cl.

National ( oalition of Hispanic Health and 11111'0.111 ServiceOrganizations, 108,Deborring Ptiventicc f calth Care to f 11.-pomi,. A A Loma! for Piomdcr'.

Washington, I )( Ihe National Coalition of I iispanic Ilealth andHuman Service ga t ions.

Nguyen, I )ao,' 1087Presentation at Multicultural Issues .1 rock Swoon, 1 o'ital Conferenceof the It,choit.di hn. Parent (TAIT) hol,,ct.

Boston, M. (Confereace in Crystal City, VA) December 7.10.

Oghu, John, 1087Cultural Influent es 'ill Plasticity in I 'lunar, I h'velopment In IlesMalleability of Chihhoi. lames I . ( iallagher an l ( raig T. Ramey, eds. lip155 -loo. Baltimore, MI): Paul I I. Brookes Publishing

Pala( ca, Kathryn, toot,Wavf of H'''iking kVith Navajos Wh Not I earned the WhiteMan's Ways. Nano, I Inc,. StVIC1111)U1 t

tianiora, ltdian, 1078Conceptions of Health and Disease Aiming lipanish ans.

/Inman Cathohi .',%h1010:1141 Rovu, P.: 31.1 323

stack, Carolyn, 1074111( )ut strategic,: for survival in a Mack Community. NY: I !awe!. iind

Row.

Strickland, lustine, 1080Personal correspondence.

Texa,, Department of Human Si' COWS, UndatedManaging has/lit:Ise Refugee .';et-nce. Programs. Texas Department ofHuman Services.

Westby, Carol E., lgtitlCultural Difference:i in CargiveChild Interaction: Implications forAssessment and Intervention. In Communication ni,orders ira AlulticultwalPopulation,. L. Cole and V. Deal, eds. Rockville, MD: American Speech,Lanwiage and Hearing Association.

It)

Resource Programs

Projects and Organizations Which Include and/or Affect Culturally/Linguistically DiverseInfants and Toddlers and Their Families

Following are some of the resources which have cometo our attention in the course of preparing thispublication. Staff of each have expressed willingness toappear as a resource and completed a questionnairewhich provided the information that follows. The list isby n( means exhaustive, but does cover a range ofprogr,ims and services, not all of which work specificallywith young children with disabilities. The list is dividedinto "organizations," which are permanent entities withsome relationship with multicultural populations, and"projects," which are funded for specific activities forspecific time periods. Within these two categories,programs are listed alphabetically within states. Furtherbreakdowns would be misleading in some cases. Thereader kx)king for resources is advised to peruse thediversity of the entire list.

Organizations

CALIFORNIA

California Urban Indian Health Council, Inc.2422 Arden Way, Suite A-32Sacramento, California 95625(916) 920-0313

The Council is a non-profit Indian managed corporationestablished to provide a unified voice to articulate the healthneeds of the state's growing urban Indian population. TheCouncil provides support to local urban and rural Indianhealth projcts, services of include: dental care;optometric care and eyeglasses; prenatal care and WIC; childimmunizations; health education programs; family planning;venereal disease screening; well-baby clinics; andtransportation to and from other services. Specific projectsinclude:

Indian Pr-initial Ac, r,s Proied

Rosanna Jackson, Project DirectorFetal Alt oho/ .qunarorne ('r'a'nt Proltit

Joseph Rix he, Projc, t I )ireetorAn American Indian Comprehooive Mah Tnal and Child !twill'

Pro,vram

Karen Tracy, Project Director.

Hispanic Family InstituteAn Adoption/Foster family AgencyA Division of 11 Centro Human Services Corporation5701 S. Eastern AvenueCity of Commerce. California 00040

To recruit appropriate prospective Latino adaptiveive parents

20

and/or foster homes and subsequently, to provide thenecessary comprehensive services, including homeassessments and placement of children in adoption and fostercare and all follow-up services which may be necessary,including post-adoption services.

No, th East Medical Services1520 St xkton StreetSan Francisco, California 94133(415) 391-9686Sophie H. Wong, Executive Director

Provide bilingual and culturally sensitive health care tomonolingual Chinese and Vietnamese populations. Acomprehensive perinatal program and pediatric care onsiteprogram has been established for financially burdened families.

Northern California Comprehensive Sickle Cell CenterSan Francisco General HospitalPediatric Hematology and Adult Hematology Services1001 Potrero Avenue, Room 615San Francisco, California 94110(415) 821-5169Dr. William Mentzer, Pediatric HematologyD1. Stephen Embury, Adult HematologyMary Roplan, PNP, Pediatric Hematology

The population served by the organization includes any personat risk of having a child with hemaglobinopathy, any personwishing testing, and any person diagnosed withhemaglobinopathy, including sickle cell disease, thalassemiaand other blood conditions. The program includes patient care,screening, community education, counseling, research,advocacy and psychosocial support. The Center consists ofinterdisciplinary teams including physicians, psychologists,nurses, social workers, and genetic counselors. EffectiveNovember, 1989, the Center will be part of a California StateNewborn Screening Program.

Santa Clara County Health DepartmentRefugee health Services ProgramPark Alameda Health Facility976 L mien AvenueSan Jose, California 95126(408) 299-6970James Powell, Program Manag.T

The program provides a variety of preventive health careservices for all county refugees, regardless of financial status.Stall. language capabilities include Englkh, Cambdian,Chinese, Cantonese, Fukienese, Mandarin, Farsi, French,I .aotian, Thai and Vietnamese

Till. Clinic for Women, Inc.Asian Health l'roject3860 Vest King Boulevardlos Angeles, California 90008(213) .05-6571Kartie Shibata, 1)irector, Asian I lealth Project

T.H.E. Clinic is a non-profit community clink specializing ingynecological and obstetrical services. The Clinic provideshealth education and interpretation services to culturallydiverse populations in Los Angeles County and Asian Pacificcommunities with emphasis in family planning and productivehealth. Resource materials are available in English, Japanese,Vietnamese, Cambodian, Lao, Tap; )g, and Thai.

COLORADO

BUENO Center for Multicultural EducationEducation Building, Campus Box 249University of Colorado at BoulderBoulder, Colorado 80309-0249(303) 492-5416Dr. Leonard Baca, Director

The Center promotes quality education with an emphasis onthe value of cultural pluralism in our schools through acomprehensive range of research, training and service projects.The Center is committed to facilitating equal educationalopportunities for cultural and language minority students.Programs include a BilinguallMulticultural/Special EducationResource Center, Bilingual Special Education CurriculumTraining, Bilingual Special Education Inservice Training,Paraprofessional Training Project, High School EquivalencyProgram, and Family English Literacy Program.

DISTRICT OF COLUMBIA

National Coalition of Piz:panic Health and Human ServicesOrganizations ( COSSMHO)1030 15th Street, N.W., Suite 1053Washington, D.C. 20005(202) 371-2100Mary Thorngren, Director, Provider EducationRaphael Metzger, Publications

COSSMHO's priorities include mental health, chronic diwaseprevention, health promotion, substance abuse, maternal andchild health, youth issues and access to health services.COSSMHO conducts ,1 ional demonstration programs,coordinates research, and serves as a source of information,technical assistance and i,olicy analysis. A number ofpublications are available, including Delivering Preventive I lealth

Care to Hispanics: A Morwal for Providers, I lispaic Families, and

T.--The Hispanic Outreach Team.

MASSACHUSETTS

Massachusetts 1)evelopmental 1)isabilities CouncilCommonwealth of Massachusetts600 Washington Street, looni 070Boston. Massachusetts 02111(617) 727-0374

Jo Bower, Associate Planner

Publication, Mawritie with ni.,abilitte, in A/laaielni:etk .1-,ervice Need!,

and Proxram InitiotivtN. The Council has developed disability

information aid referral sheets for languages spoken in thestate. Council has a committee that meets monthly toimplement projects related to minorities and disabilities.

MICHIGAN

Ann Arbor Public SchoolsSpecial Education DepartmentPupil Personnel Services2555 S. State StreetAnn Arbor, Michigan 48104(1) (313) 994-2318Margery Haite, Teacher/Consultant

Provide special education services to birth to 5 year oldsidentified under P.L. 99-142. Services include special educationteacher, speech and language teacher, physical therapist oroccupational therapist as needed.

MINNESOTA

PACER Center, Inc. (Parent Advocacy Coalition forEducational Rights)4826 Chicago Avenue, SouthMinneapolis, Minnesota 55417(612) 827-2960Maria Anderson, Early Childhood CoordinatorVirginia Richardson, Parent Training ManagerPACER serves parents of children and young persons with alldisabilitiesphysical, mental, learning and emotional. TheCenter has a special emphasis on reaching underrepresentedpopulations, and translates workshop flyers, providesinterpreters, and holds workshops in the community. Someeducational materials are available in Spanish and Hmong. TheCenter also has an Early Childhood Family Training Project.

MISSISSIPPI

IM,Rgis,srisdnsiplpi State Department of Health Genetic Screening

P.O. Box 17002423 North State StreetJackson, Mississippi 39215-1700(00 1 ) 900-7619

Daniel R. Bender, Director, Genetic Screening

Testing, screening, and followup of all persons, including allnewborns, with genetic disorders in the state.

NEW MEXICO

Southwest Communication Resources, Inc.Box 788

liernalillo, New Mexico 87004(50;1867-3390Randi Suzanne Milach, 1111)ject 1)ireutor

A nor- profit community based organi/ati ui dedicated toproviding speciali/ed services to families who have childrenwith special needs. These services include:

21

Pueblo Want Patent Mutation

A home-based int ant-family early intervention program forfamilies v '01 intants and toddlers who !Live healthimpairinti,(, developmental disabilities, or who are at "risk" ofhaving a developmental disability, Services include parentsupport and training, ,uid therapeutic child development.

Family Servife. Proxram

A home-based family preservation program for families whosechildren are "high risk" for abuse or neglect. Services includeparent training and support.

bilicabon AT Parent!: of Indian Chit Iren nt titre,url Net.(1,;Projet t

A statewide community-based parent training and informationprogram for American Indian families whose children havechronic health impairments and handica:iping conditions.Services include parent training and support, and consultationfor professionals serving American Indian children with specialneeds.

NEW YORK

New York Council on Adoptable Childrenout, Broadway, Suite 820New York, New York 10012(212) 475-0222Ernesto Loperena, Executive DirectorRecruitment, preparation and referral of prospective adoptiveparents for older, handicapped and minority children.

New York State Genetic Services ProgramNew York State Department of HealthWadsworth Center for Labs and ResearchEmpire State Plaza, Room E275P.O. Box 509Albany, New York 12201(518) 473-4830Karen Greenda le, M.A., Genetic Services ProgramCoordinatorProgram serves children and adults with birth defects orgenetic conditions; anyone with questions about risk for birthdetects or genetic disease due to family history, drug ormedical exposure, ethnic backgi -and, etc. Twenty-threegenetic counseling programs are adminiQered throughout thestate of New York. Although all of them see culturally diversepatient populations, some target specific ethnic groups such asChinese, Chasidim, Hispanics, Blacks, etc., at risk for specificgenetic conditions.

TENNESSEE

Tennessee Newborn Ifemaglohinopatliv Screening Program'Tennessee Department of Ilealth and EnvironmentMaternal and Child I 1c,ilth525 Cordell I hill BuildingNashville, Tennessee 37210(o15) 741 -7335

Suzanne Rothocker, R.N., Ph.D., Nurse ConsultantAll newborn infants born in Tennessee hospitals are served

22

The goals of this program are to redo e infant mortality andmorbidity due to sickle cell disease and otherhemoglooinopathies through early diagnosis and initiation ofprophyla011 penicillin treatment and comprehensive medicaltare, to rientify families at risk, and to reduce duplication insickle cel! screening.

TEXAS

CLIWN Family Resource Center for Development, Educationand Nut ition1208 Er.t Seventh StreetAustin, Texas 78702(512) 47.7-0017

',/argas Adams, Ph.D., Executive DirectorProvide.: educational and human services to meet the needs ofchildren and parents of all ethnic backgrounds, with specialemphasis upon Hispanic and African American families. Thisresource: and development center also produces bilingualeducational materials and media and provides advisory servicesthri.nigh.rut the U.S. for organizations addressing the specialneeds of culturally diverse populations. CEDEN's Parent. ChildProgram for reversing and preventing developmental deLys inhigh-risk children has been replicated in communities of Eastand S Texas. CEDEN's materials are for home parenteducato., classes and parents.

VIRGINIA

interstate Research Associates792t) Jones Branch Drive, Suite 1100Mclean, Virginia 22102(703)893 -x778Ray WorkmanThe organization serves mobile migranrs served in migrantHead Start programs throughout the United States (24grantees in approximately 33 states). IRA is the resourcecenter providing training and technical assistance (information;resources; materials; national, regional, and on-site training,etc.) to the 24 migrant Head Start grantees in 33 states in theU.S. IRA has served in this capacity as a training and technicalassistance provider for approximately 20 years.

Mental Health Services for Migrant FamiliesFast Coast Migrant Head Start Project4200 Wilson Boulevard, Suite 740Arlington, Virginia 22203(703) 243-7522To serve migrant families and children who travel along theEastern U.S. seeking agricultural work. These families havestresses unique to living conditions which adversely affect themental health of the child. The project will providecomprehensive mental health services to approximately 00children and their families. The project will also educate localmental health workers about the unique characteristics ofmigrant children and their families; educate FCMHSP staff inthe recognition of mental health services and their use; andtrain ECM11S1) ce'nte'r staff turn honing support systemand linkage to the provision of mental health services.

WASHINGTON

International District Community I lealth Center410 Maynard Avenue SouthSeattle, Washington 98104(20o) 401-3235Bria Chakofsky, Clinic ManagerThe center provides multilingual, culturally sensitive primaryhealth care to Asian)Pacific Islanders, aged prenatal to elderly,regardless of ability to pay. The Center has a staff that speakstwelve Asian and Pacific Islander languages and dialects(Khmer, Cantonese, Toisanese, Mandarin, !Among, Mien, Lao,Korean, Tagalog, Ilocano, Thai and Vietnamese).

Novela Health Foundation2529 loth Avenue SouthSeattle, Washington 98144(20o)325 -0897Sabrina Souffront, Admini trative AssistantServing the Hispanic and English communities, the foundationconsists of a group of health professionals developingappropriate health educational materials. Since 1080, thefoundation has published health videosFace to I-a e and 'Thu

Awakening of Raymond, as well as a publication on Caring for the

Litino AIDS Patient 111V Test Counseling. Food charts arecurrently being developed.

Projects

ARIZONA

Community-Based Genetic Services Network forSouthwestern Native AmericansUniversity of Arizona College of MedicineDepartment of PediatricsTM's' in, Arizona 85724(002) 705-5075

Eugene Floyme, fVI.1)., Project I )irectorTo address the low utilization of genetic services and thepresumably increased frequency of congenital anomalies andgenetic disorders in Native Americans of the Southwest dueto alcohol abuse and high rate of diabetes. 'Ilw projectaddresses this low utilization through a community-basednetwork of birth defect tsIgenctics clinics, health professionaleducation, and community education, taking into account thecultural and language variability of Native Amerie ons by usinge)tisting local public health and social service resources.

Community Systems Approach to American Indian I amitiesInstitute for }Inman IkvelopmentNorthern Arizona UniversityBox 5e30

Arizona 80011(002.) 523 4701

Richard Car roll and loanne t )V011101, ( It I )iret tor,Provide culturally appropriate interventiili service to highrisk Native Ameritan infants, their familie and thecommunitY through the use of indigenoir, parapiides.atinalsas set Yid, providers and ti Milers. I Live Oki) developed

publications, family service plans, protocols, assessmentprocedures and other related materials,

Native, American Research and Training CenterUniversity of Arizona1041 List }Hen StreetTucson, Arizona 85720(n02) o21-5075Jennie R. Joe, Ph.D., MPH, DirectorPaul Skinner, Ph.D., Co-DirectorResearch and training activities directed toward improving thequality of life for American Indians and Alaska Natives withdisabilities. Projects include research into sociocultural aspectsof disability and rehabilitation, development of culturallyrelevant service delivery models, and/or training activitiesrelated to needs and problems of Native Americans withdisabilities.

CALIFORNIA

Child Welfare Social Work Traineeships to EncourageParticipation of Working and Minority Students in ChildWelfare PracticeCalifornia State University, Long Beach FoundationDepartment of Soda! Work1250 Bellflower Boulevard1 ong Beach, California 90840(213) 985 -8180Janet Black, LCSWA child welfare traineeship for MSW students ia collaborationwith Orange County Social Service Agency, to meet themultiple demands of abused and neglected children whorequire professionally trained chidlren's service workers. TheMSW program focuses on cultural diversity and offers a part-time program. Project focusses on providing stipended fieldwork placements at Orange County Social Services Agency toMSW students in the area of child welfare with particuloremphasis on welt-king students nil on minority students. Theproject hopes to attract minority students to child welfpractice.

( 'ount v Hospital Genetic Counseling Service for High-Rii : ,

Underserved, Multiethnic, Monolingual Perinatal PorulationUniversity of California at San I'Falli'iscoDepartment of Obstetrics"( tynecology and ReproductiveSciences

San Prone ise o, California 0414 3

1:0 .2, I A.3

Mittman, Project I Thecto,A model acres, program for bringing sophistit :nett geneticeimnseling, edit! awn and prenatal eliagnosr, to an1111Sit'I,01.` dl, lughsdrii.:11.0p.opulation 1-!tin I rant co (Hospital \ledical

Infant Mortality Among Intlot hmesc Refuges,,Interuationl Population ( elite!S,111 011'01 State l!niversitvSan 1)it ,rnia 02'82. 0.18.(0 to) 28;1

23

John R. Weeks, Ph.D,, Project Director(ended 2, 25/88)

Used two new sources of data to estimate the level of infantmortality among Indochinese refugees, to compare thoselevels with other population groups, and to developIndochinese-specific risk profile's for use by health careprofessionals, planners, and policymakers.

Southeast Asian Developmental Disabilities PreventionProgram (SEADD)1031 25th StreetSan Diego, California 92102(b19) 235-4270

Dorothy M. Yonemitsu, LCSW, Program DirectorJames 0. Cleveland, Ed.D., Project ManagerServe Southeast Asia!' refugee children from 0-3 and theirfamilies. Are developing a "Bicultural Bilingual CounselorsTraining Manual." Videotapes on the postnatal car" of infantsand their mothers are available in English, Cambodian,Hmong, Laotian, and Vietnamese.

CONNECTICUT

Ninos Especiales ProjectDivision of Child and Family StudiesUniversity of Connecticut Health CenterPediatric DepartmentThe Exchange, Suite -lcul270 Farmington AvenueFarmington, Connecticut 00032(203) o74-11g5

This model e ?monstration project provides culturally sensitive',family-focussed early intervention services to P, wrto Ricanchildren, birth through 3, who have severe multiple handicaps.Training is available to early intervention programs currentlyserving the Puerto Rican population.

DISTRICT OF COLUMBIA

Child Welfare TraineeshipHoward UniversitySchool of Serial Workrid, and Howaril Place, N.W.Washington. I 20059(202) 030 7300Clarice WalkerTo provide financial as,istance through traineeships toy full-time degree ),tuden, in I hityard'i. Schtiol of Six.ial WorkMai-ters I)egrec program to receive' sees i111/(11 ir,1111111); ii

child welfare. A special cone-ern is to increase the numberBlack professional social workers with child welkin' e pertkeand to improve the child %%Altar(' delivery systems in dim'.serviet's and management.

t ;allot idet University800 I lorida Avenue, N.IWashiny,tkin, 2.0002

Irif'ci,,.trori Atqihr . 1 HI tr.

11111111di't Research Institute, Kendall ).;chiiol l'A`.; 9)

24

(202) 051-520oKathryn Meadow-Orlans, Ph.D., Project DirectorThis project is designed te. nvestigate the in.*, act of deafnesson interaction of deaf infants and their hearing mothers. Dataare being collected at ages 9, 12, 15, and 18 months, includingvideotapes of face-to-face interaction, mastery motivation withtoys, free play, attachment, plus interviews and questionnairesto elicit information about family stress and available supportsystems.

interaction anti SupportMothers anti Dcaf Infants

(Gallaudet Research Institute, Kendall DemonstrationElementary School)Data Identical to that noted above will be collected from deaffamilies with both deaf and hearing children. The KendallElementary School has programs for deaf infants andpreschoolers as well as for older children.

National information Center on Deafness

(202)b51 -.5051

Loraine DiPietro, Director

Linkages

clo TCI, Inc.3410 Garfield Street, N.W.Washington, D.C. 20007Nancy Gale, EditorTCI, Inc., is an Indian-owned small business that publishesLinkag,s, a bi- monthly newsletter that covers topics pertainingto Indian child welfare.

GEORGIA

Reduction of Minority Infant Mortality in GeorgiaGeorgia CONTINUUM Alliance for Healthy Mothers andChildren1252 West Peachtree Street, N.W.Suite 311Atlanta, Georgia, 30309(4041 873-1093

W. Mary Langley, RN, MPH, Project DirectorRetina' racial/ethnic disparities in rates of infant mortality inGeorgia by reducing ixistneonatal mortality rates associatedwith inadequate' parenting skills and poor utilization ofprenatal and child health care services and establish self-sustaining coalitions that will monitor Ind address problemsthat colitribute to poor pregna. ty outcomes. The MinorityConnection Project has developed programs through the BlackChun h to reach at-risk populations for high infant mortalityraft', 0111(1 teenage prq.urancy.

HAWAII

I lealtli Start Prop,raiii tor Promotion of Po,;ItiVeI N'VeitT111(.111 ,111k1 rtVVelltnill of (lulu Abuse

(enterIKriptolani Medical ( entei

hapiolainI I 1,1%vaii

ttl.k)t)

hill

Gail Breakey, RN, MPH, Project DirectorCommunity-based family support program serving childrenaged 0-5 from underserved, culturally diverse populations.Goals are to prevent child abuse and neglect, to promotepositive child development to all at-risk families of newbornsin geographically based target areas. Families receive homevisiting services until target child reaches age 5.

Infant Feeding and GrowthU.S.-Related Pacific IslandsUniversity of HawaiiHonolulu, Hawaii 96822(808) 948-8832Giglio la Bruffi, M.D., Project DirectorTo offer a continuing education program on human lactation,infant feeding and growth monitoring to health personnel inU.S.-related Pacific Islands as part of a broad effort to increasebreastfeeding incidence and duration and monitor infant andchild growth.

Preschool Preparation and Transition ModelDepartment of Special EducationUniversity of Hawaii208 Wist Hall1776 University AvenueHonolulu, Hawaii 90822(808) 948-7740Vulerie Campbell(project is ending)Developing service delivery model to prepare handicappedinfants, families, professionals for least restrictive preschoolenvironments. Many participants come from minority ethnicgroups.

ILLINOIS

Illinois Project for Statewide Screening and Follow-Up ofNewborns for HemoglobinopathiesIllinois Department of Public Health, Genetic DiseasesProgram535 West JeffersonSpringfield, Illinois 02701(217) 782-0495Marla J. Buro, B.A., Sickle Cell :'rogram CoordinatorThis project has expanded the newborn screening componentof Illinois Department of Public Health, Genetic DiseasesProgram, to include screening and follow-up of all newbornsin the state for sickle cell diseaseltrait and otherhemoglobinopathies. The project provides ongoing diagnosticservices, medical consultation, prophylactic medication forinfants with sickle cell disease, and confirmatory testing anddiagnosis for infants who are presumptive for sickle cell traits.Education/counseling services pare,Its of infants identifiedwith sickle cell trait are also available. Finally, it is the intent ofthis project to provide ongoing education and informationabout sickle cell diseaseltrait and other hemoglobinopathies tohealth care professionals and the public.

KANSAS

Adoption for Black ChildrenLutheran Social Service of Kansas1355 North HillsideWichita, Kansas 67214(310 086-0045To provide families for Black children who would otherwiseremain in foster care and specific training for social workers inv.'orking with Black clients.

NEW JERSEY

Project to Increase the Utilization of Genetic Testing andCounseling Services by Hispanic and Immigrant PopulationsNew Jersey State Department of HealthSpecial Child Health ServicesCN304Trenton, New Jersey 08025(009) 292-15nDoris Kramer(ended o130189)

To develop and test strategies to increase utilization ofgenetics services by lispanic and immigrant populations infive counties in di.; rd' eastern region of the state. As acomponent of the o 4.111 goal, the project sought to assistgenetics service pro !ers to communicate more effectivelywith their non-English speaking clients and to provideculturally sensitive services.

NEW MEXICO

CHEWS (Children with Handicaps, Expanding StatewideServices) Nutrition ProjectNew Mexico Health and Environment DepartmentPublic Health DivisionMaternal and Child Health and Nutrition BureausHarold Runnels Building, Room N-3078Santa Fe, New Mexico 87503Ann Taulbee, Project DirectorCary Bujold, RI), Project CoordinatorThe project's primary concern is access to care for childrenwith special health care needs and insuring that they receivethe highest quality of nutrition services available. Project staffhave created a ,ystem throughout New Mexico to meet thisneed, have trained providers to conduct nutrition screening,and have identified local community-based dieticians for theprovision of services. They are presently working towardidentifying reimbursement methods for the community-basednutrition services. Professional, paraprofessional and parentnutrition education materials have been devoloped. All parenteducation materials are bilingual (English-Spanish), with onehandout---"Feeding Positions"--available also in Navajo.

25

Project Ta-kosAlta Mira Specialized Family Services, Inc.3201 4th Street, N.W.Albuquerque, New Mexico 1t7107(505) 345-b88Q

lInderstanding Family llniquemss Through Cu liund Divers;Al: a 12-

hour course developed by Project 'Fa-kos to assistprofessionals working with families who have children withdevelopmental delays, or are considered "at risk," to view thedynamics of culture when an interventionist works withfamilies. In order to avoid stereotypical lists of assumptivecharacteristics by ethnicity, the course uses the theory thatsuggests that cultural sensitivity is a developmental processwhereh'.. the "supportive" interventionist passes through thefollowing stages: awareness of ones' Own culture;consideration of the existence of diversity; heightenedawareness of cultural aspects; and the final stage of reachingand maintaining a balance or integration. Once an awarenessof the need for cultural responsivenes r. has been establishedthe course explores diversity regardin4 common variablesknown as "world views" or "life ways ' and discusses ways tolearn procedures and techniques for gathering informationabout a family's unique personal viev.'s preferred lifestylewhile minimizing the interventionist's intrusiveness. The finalpart of the course helps the interventionist consider whichvariables are most relevant to the providerlfamily partnership.

NEW YORK

CROSSRO A .)S: A Cooperative -Fransagencv i rogram forPreschool Culturallyringuistically Diverse ExceptionalChildren875 ElmwoodBuffalo, New York 14222(71b) 88e-5857

Isaura Barrera Met/, I )irectorCoordinate and deliver services to culturallyllinguisticallydiverse (including Hispanic, Black, Asian American andAmerican Ind:cm) preschool handicapped and at risk children,0-5, and :r families in the least restrictive settings; prepareprogram staff and other caregivers to serve these populations.Services are integrated into existing programs rather thanbeing segregated separate services.

Determinants of Adverse Outcome i:mong Tr xldlers ofAdolescent MothersResearch Foundation for Mental HygieneNew York Psychiatric InstituteNew York, New York 10032(212) 4v0 -2208( ;ail Wasserman, Ph.D., Project DirectorTo follow longitudinally IOU Black and !list-rank adolescentmothers and their young children and to compare childoutorme to a group of matched older women and children.Investigate environmental fa( tors involved in child outcomeand ex..: i n e role of the caregivers, especially grandmothers,as tl,,y affect children's outcrimes.

2b

Identifit Ann, Intervention, Involvement: Training PersonnelWorkinv with Migrant Parents of Infants and ToddlersState University CollegeOld Main Building, 1131)Department of Education Studies, SUNYNew Paltz, New York I2501(914) 257-2830 or 2838Lynn Santa, Project CoordinaiorProject serves personnel working with migrant families---educators, social service and health workers, parents, day carestaff, administrators, case managers, and earlyinterventionists, Three one-half day sessions that includevideos, professional and parent materials, and activitiesfollowing training manual guidelines are provided. Thesemulticultural materials aid families in the identification ofspecial needs, intervention and play activities, and rights andentitlements.

NORTH CAROLINA

University of North CarolinaDepartment of Maternal and Child HealthSchool of Public HealthCamp's Box 7400Chapel I lill, North Carolina 27599(Q19) 9be-5974Elizabeth Walkins, D.Sc., Project Director

Migrant lily Health Advisors -A Strategy for Health Promotion

Migrant farmworker women and children are predominantlyfrom minority ethnic groups. The project seeks to reduce theproportion of migrant women delivering low birth weightinfants; reduce incid.nce of serious andlor chronic conditionsamong migrant newborns and infants; increase prenatal visitsto a minimum of 9 during pregnancy and one pc,tpartumvisit; and increase well-child visits to 5 for children under one.

Improving the Health of Migrant Mothers and Children

(ended 0130188)

The goal of the project was to improve the health andnutritional status of migrant farmworker women and childrenfrom 0-5 rci?iving health services at the Tri-CountyCommunity i-lealth Center, a federally funded health center.In 1060, the prenatal population served was b2"o Hispanic,24°., Black American, 12''6 White American, Po Haitian andother.

OKLAHOMA

Oklahoma State Department of HealthMaternal and Child I lealthP.O. Box 53551Oklahoma City, Oklahoma 73152

( )A1ahoma Native Amerum Genetic Semnes Program

(105) 271-bol7Mary Ann ("off matt, M.S., Project DirectorProvides a coordinated network of genetic services that areculturally acceptable and financially accessible to NativeAmericans in Oklahoma.

Family 5upport Projed

(405) 271-4471Nancy Fire, R.N., M.S., Project DirectorTo assess the needs of the urban Oklahoma City SoutheastAsian families who have children with special health areproblems. To develop family supptirt projects with four NativeAmerican tribal groups.

SOUTH CAROLINA

South Carolina Department of Health and EnvironmentalControlDivision of Children's Health2b00 Bull StreetColumbia, South Carolina 20201

Follow-up of Identified Newborns with Hemoglobinopathies

(803) 737-4050Rose W. Alford, Newborn Screening Program AdministratorInfants receive tests fur PKU, congenital hyptithyroitlism, andhenoglobinopathies (mainly sickle cell disease) as part of theneonatal screening mandated by state law. Follow up isprovided for those found with positive results for treatmentand medical management. The Hemoglobinopathy Projecttargets those infants foulid with traits and disease. Infantswith traits are referred to th,.. Regional Sickle CellFoundations, so their parents can receive genetic informationand testing. Those infants with sickle cell disease are referredfor long-term medical services, including prophylacticantibiotics, and are tracked for the first three years of life toassure appropriate medical services.

statewide Action Plan to Promote 13rwstteedins

(803) 734-4,10Robert H. Buchanan, jr., Project DirectorA project to ink reame the number of low income aryl Blackmothers who breast Feed. Breastfeeding promotes maternalinfant bonding which is particularly imptirtant to I. .nikes withinfants with disabilities. Further, certain disabilities may callfor specific instruction and techniques with regard tobreastfeeding, which the project can provide.

SOUTH DAKOTA

Mental Health Twatment Continuum for Abused andNeglected Children and Their FamiliesSouth 1)akota 1)epartment if Homan ServicesDivision of Mental Health700 Citnicrnors 1)rivePierre, South Dakota 57501(605) 773-5001A local demonstration project to develop comprehensivesystem of care for youth and families served by the childwelfare system by t ombining re ources and personnel of ( hillProtection Services and private mental health centers. Theproject will prevent unnecessary removal of children fromtheir families and wil provide an alternative to residentialtreatment or hospitalization for children served by (1S. Theproject will serve a Lrge percentaw of Native Americans.

TENNESSEE

Tennesee Breastfeeding Promotion ProjectTennessee Department of Health and Environment100 Ninth Avenue NorthNashville, Tennessee 37210-5405(o15) 741-0205Mindy 1.a/artiv, MS, RI), Project DirectorTo increase the rate and duration of breastfeeding among lowincome women in two rural counties and one urban countywith large Black populations.

TEXAS

Acculturation, Psychosocial Predictors and BreastfeedingUniversity of :Texas Medical BranchDepartment of PediatricsRoute C-51Galveston, TX 77550-27741400/ 701-1130David K. Rassin, Principal InvestigatorA research project designed to increase incidence andmaintenance of breastfeeding in a U.S.-Mexico borderpopulation. The ixtpulation will be characterized bydemographic factors witl, respect to ethnic background anddegree of acculturation (from Hispanic to Anglo and fromAnglo to Hispanic).

U.S.-Mexico Border Health AssociationlCarnegie-Pew-PAHOnoCht N. MesaSuite nO0Ed Paso, Texas 700121015) 581-on45Dr. I lerbert 11. Ortega, Project Diructor

Maternal ant! Intirit Risk Assessment Retinal Trainmx Prated (U.S.-Mexico Border Health ASSOCiatillin)(ended 3/31/6Q)

ti improve health status of women and infants on Texas-Mexico border' by 1) maximizing utilisation of heath resourcesand improving c(xirdination of services in both nations; 2)enhancing binational staff development efforts; 3) increasingtoordination of Maternal and Child Health services betweenthe U.S.-Mexico Border Health Association and the 'TexasDepartment of I icalth.

Primary i With and AICI I leimaloNse:: for Women, Adolesants andChildren (( Artwgic-Pow-PAIR))

o develop and establish binational institutional networks foran inter-disciplinary investigation collaboration, education andtraining along, the U.S.-Mem( o border, with the purpose ofimproving, women's health and healtn of adolescents andchildren.

27

UTAH

The Navajo Way

Southeastern Utah Community Action ProgramP.O. Box 508Wellington, Utah 84542(801) 637-4960

Lynnette M. Hadden, Executive DirectorDevelopment of preschool materials on, including a videotapeabout, Navajo culture.

VIRGINIA

Hampton University Mainstreaming Outreach ServicesHampt,m, Virginia 23668(804) 727-5751 or 5533Marie S. Shelton, DirectorTo help schools, community agencies and other organizationsdevelop programs to integrate handicapped children 0-8 fromdiverse cultural backgrounds into regular classrooms andcommunity programs.

WASHINGTON

Khmer Cultural Enrichment ProjectCity of Seattle Head Start Program105 Union Street, Suite 160Seattle, Washington, 98101(206) 386-1021John Wrobleski, Education SpecialistThe project will develop staff and parent training materialsand classroom activities and materials on the Khmer ofCambodia. The project will also demonstrate the process ofsensitively gathering information from non-English speakingand limited-English speaking families.

28

RecommendedReadingAmerican Speech, Language clod Hearing Association, 1987Communication Sciences and Disorders: Funding Sources for MinorityStudents. Rockville, MD: American Speech, Language andHearing Association.

Anderson, Penny, 19C0Serving Culturally Diverse Populations of Infants andToddlers vc;th Disabilities. Farly Child Development and Care.Forthcoming.

Benjamin, Marva P. and Patti C. Morgan, 1989Refugee Children Traumatized by War and Violence: The ChallengeOffered by the Service Delivery System. Washington, DC: CASSPTechnical Assistance Center, Georgetown University ChildDevelopment Center.

Bower, Jo, 1989Minorities in Massachusetts: Service Needs and Program Initiatives.Boston: Developmental Disabilities Council, State ofMassachusetts.

Cole, Lorraine and Vicki Deal, eds., 1986Communication Disorders in Multicultural Populations. Rockville, MD:American Speech, Language and Hearing Association.

Committee on the Status of Racial Minorities, 1987Multicultural Professional Education in Communication Disorders:Curriculum Approaches Rockville, MD: American Speech,Language and Hearing Association.

Cross, Terry, Barbara Bazron, Karl Dennis, and MareasaIsaacs, 1989Towards a Culturally Competent System of Care: A Monograph onEffective Services for Minority Children Who are Severely Emotional4Disturbed. Washington, DC: CASSP Technical AssistanceCenter, Georgetown University Child Development Center.

Cunningham, Keith, Kathryn Cunningham, and JoanneO'Connell, UndatedCultural Perceptions and Their Impact Upon Special Education ServiceDelivery. Flagstaff, AZ: Native American Research and TrainingCenter, Northern Arizona University.

Deal, Vicki and Vicente Rodriguez, 1987Resource Guide to Multicultural Tests and Materials in CommunicativeDisorders. Rockville, MD: American Speech, Language andHearing Association.

Finck, John, 1984Southeast Asian Refugees of Rhode Island: Cross CulturalIssues in Medical Care. Rhode Island Medical Journal 67 (July):319-321.

Harrison, I. and D. Harrison, 1971The Black Family Experience and Health Behavior. In Healthand Nye Family: A Medical-Sociological Analysis. C. Crawford, ed. Pp.175-199. NY: Macmillan.

Harwood, Alan, 1981Ethnicity and Medical Care. Catnbridge, MA: Harvard UniversityPress.

Kumabe, Kazuye, 1985Bridging bbnocultural Diversities in Social Work and Health. Honolulu:University of Hawaii School of Social Work (available fromNational Maternal and Child Health Clearinghouse, 38th andR Streets, N.W., Washington, DC 20057).

Kunitz, Stephen, 1983Disease Change and the Role of Medicine: Tla Navajo Experieme.Berk; ley: University of California Press.

Lin-Fu, Jane, 1988Population Characteristics and Healtn Care Needs of AsianPacific Americans. Public Health Reports 103 (1): 18-27.

Locust, Carol, 1986American Indian Beliefs Coo.erning Health and Unwelluess. Tucson:Native American Research and Training Center, University ofArizona.

Martinez, Ricardo Arguijo, 1978Hispanic Culture and Health Care. St. Louis: The C.V. Mosby Co.

Michaelson, Karen and Contributors, 1988Childbirth in America: Anthropological Perspectives. South Hadley,MA: Bergin and Garvey.

Miranda, Manuel and Harr/ Kitano, eds., 1986Mental Health Research and Practices in Minority Communities:Development of Culturally Sensitive Training Programs. Rockville, MD:National Institute of Mental Health, U.S. Department of,-lealth and Human Services.

Morris, Lee, ed., 1980Extracting Learning Styles from Social/Cultural Diversity: Studies of I-weAmerican Minorities. Norman: University of Oklahoma Press.Multicultural Asian Project, 1985A Multicultural Head Start Program for Indochinese Parents and theirChildren. Rockville, MD: Montgomery County Board ofEducation. July.

Northwest Indian Child Welfare InstitutionPositive Indian Parenting: Honoring Our Children By Honor* OurTraditionsA Made! Indian Parent Train* Manual. Portland, OR:Northwest Indian Child Welfare Institute, Parry Center forChildren. 1986.

Cross-Cultural Skills in Indian Child Wilioe: A Guide for the Non-Indian. Portland, OR: Northwest Indian Child WelfareInstitute, Parry Center for Children. 1987.

Nyce, James and William Hollinshead, 1984Southeast Asian Refugees of Rhode Island: ReproductiveBeliefs and Practices Among the Hmong. Rhode Island MedicalJournal 67 (August): 361-366.

Orque, Modesta Soberano, Bobbie Bloch and Lidia AhumadaMonnrroy, 1983Et huh Nursing Care: A Multicultural Approach. St. Louis: The C.V.Mosby Co.

Philips, Susan Urmston, 1983The Invisible Culture: Cominunication in Classroom and Community on theWarm Springs Indian Reservation. NY: Longman.

Randall-David, Elizabeth, 1989Strategies for Working with Culturally Diverse Communities and Clients.Washington, DC: Association for the Care of Children'sHealth.

Simegi-Ailes, Sandra, 1983The ,;rowing Path: Traditional infant Activities for Indian Children.Bernalillo, NM: The Pueblo Infant Parent Education Project,Southwest Communication Resources, Inc.

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