DOCUMENT RESUME

ED 381 518 SP 035 895

AUTHOR Bishop, Kathleen Kirk; And OthersTITLE Family/Professional Collaboration for Children with

Special Health Needs and Their Families.INSTITUTION Vermont Univ., Burlington. Dept. of Social Work.SPONS AGENCY Health Resources and Services Administration

(DHHS/PHS), Washington, DC. Maternal and Child HealthBureau.

PUB DATE 93CONTRACT MCJ-507036NOTE 45p.PUB TYPE Reports Descriptive (141)

EDRS PRICE MF01/PCO2 Plus Postage.DESCRIPTORS *Cooperation; Delivery Systems; Early Intervention;

*Family Involvement; *Family Programs; InterpersonalRelationship; *Interprofessional Relationship; ParentParticipation; *Special Health Problems; *Teamwork;Young Children

ABSTRACT

This monograph represents the collective thinking ofparents of children with special health needs, family members, andprofessionals concerning what is necessary and important incollaborative rel_tionships. Collaboration is viewed as a way toimprove quality of life and health of children and their families, byworking together to humanize the service delivery system in a spiritof shared ownership and responsibility. Seven principles offamily/professional collaboration are discussed. Family/professionalcollaboration: (1) promotes a relationship in which family membersand professionals work together to ensure the best services for thechild and the family; (2) recognizes and respects the knowledge,skills, and experience that families and professionals bring to therelationship; (3) acknowledges that the development of trust is anintegral part of a collaborative relationship; (4) facilitates opencommunication so that families and professionals feel free to expressthemselves; (5) creates an atmosphere in which cultural traditions,values, and diversity of families are honored; (6) recognizes thatnegotiation is essential in a collaborative relationship; and (7)brings to the relationship the mutual commitment of families,professionals, and communities. The monograph concludes with a listof people and programs involved in the University of Vermont'sFamily/Professional Collaboration Project and a list of key elementsof family-centered care. (Contains 39 references.) (JDD)

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Reproductions supplied by EDRS are the best that can be made *

from the original document. *

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office Cl EctuCatiOnal Rasaatch and ImptomnantEDUCATIONAL RESOURCES INFORMATION

CENTER (ERIC)0 This document has been reproduced as

received trom the parson or organizationoriginating it.

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Points of view or opinions stated in thisdocument do not necessarily representofficial OERI position or policy.

BEST COPY AVAILABLE

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We would like to extend our appreciation to Merle McPherson, M.D.,Director, Division of Services for Children with Special Health Needs,for her enthusiasm, support and commitment to the principles andpractice of Family/Professional Collaboration.

Library of Congress Catalog Card Number: 92-76224Copyright © 1993 by the Family/Professional Collaboration Project

Support for this publication was provided to the Family/ProfessionalCollaboration Project through grant #MCJ-507036 from the Divisionof Services for Children with Special Health Needs, Maternal and ChildHealth Bureau, U.S. Department of Health and Human Services.

For more information, please contact:

Kathleen Kirk Bishop, D.S.W., Project DirectorPeggy Weaver, M.S.W., Project CoordinatorKaren Witkin, Parent CoordinatorMary Ann Gaschnig, M.S.W., Research CoordinatorFamily/Professional Collaboration ProjectDepartment of Social WorkUniversity of Vermont499B Waterman BuildingBurlington, Vermont 05405-0160(802) 656-8800

Family,/ProfessionalCollaborationfor

Children withSpecial Health Needsand Their Families

Kathleen Kirk Bishop,. D.S.W.withJosie WollandPolly Arangoin collaboration withFamilies and Professionals

F y rofessional Collaborationfor Children with Special Health Needsand Their F 'es

TABLE OF CONTENTS

Dedication 3

Acknowledgements 5

Preface 9

Introduction 11

Principles of Family/Professional Collaboration 15

People and Programs 38

Readings and References 45

Key Elements of Family-Centered Care 48

iJ

DedicationWe who have children with special health needs acknowledge thechallenging gifts that our children have given us. They have taughtus that patience, persistence, and joy should infuse every aspect ofour lives. In turn, we have been enriched immeasurably as we havewoven those lessons into our interactions within our own familiesand with all the professionals who share our devotion to ourchildren, and our commitment to collaborating on their behalf.

BEST COPY AVAILABLE

Family/Professional Collaboration (Or Children with Special Health Needs and Their Families 3

AcknowledgementsThis monograph celebrates more than ten years of dialogue with the manyparents, family members, and professionals who have willingly engaged withus in endless conversation and debatesometimes in formal meetings, butmore often in hotel rooms, in offices, on airplanes, in taxicabs, in theirhomes and ours, on long drives and in snowstorms.

This monograph was created with the enthusiastic support and commitmentof Merle McPherson, M.D., Director, Division of Services for Childrenwith Special Health Needs, Maternal and Child Health Bureau. Merlebelieved in and supported family/professional collaboration long before itwas fashionable to do so. She has modelled over the years the manyprinciples contained in this monograph. Merle has been and continues tobe a true partner in family/professional collaboration.

Many people contributed to this monograph.

Our National Advisory Board Members, Betsy Anderson, Polly Arango,Nancy DiVenere, Isadora Hare, Carol Hassler, Barbara Steele, JoanWeiss, and Josie Woll, worked through several days of meetings over thelast two years, sharing their ideas and experiences, commenting on drafts,willingly engaging in telephone debates, and believing in the importance ofthis work.

Our Focus Group Members, Cathy Crow, Nancy DiVenere, CarolHassler, Cindy Hayman, Michele O'Neill, Susan Rump, CarlosSantiago, Evelyn Sikorski, Megan Sutton, and Janet Vohs, participatedthrough meetings, telephone conversations, and in giving writtencomments on definitions and descriptions of collaboration, all of whichhelped to chap, a series of ideas into what are now the Principles of Family/Professional Collaboration.

The Family/Professional Collaboration Project Staff played numerous rolesin seeing this monograph through to completion with unwavering energyand commitment. Anne Wallace, former staff member, worked on some ofthe beginning ideas, organization, and structure of the monograph. KarenWitkin, Parent Coordinator, contributed her thoughts and experiences as aparent to the monograph. Peggy Weaver, Project Coordinator, collected,organized, and integrated the Practice Examples. Anne, Karen, and Peggyalso engaged in endless debates and work on words and their meanings, andhow best to communicate the principles of collaboration. And, PaulineChicoine, our Project Secretary, typed and re-typed many drafts andattended to unending details with incredible patience and a quiet steadiness.

Family/Proftssional Collaboration for Children with Special Health Nerds and Their Families 5

Many, many families and professionals responded to our early call to StateHealth Departments, Parent Groups, Special Projects of Regional andNational Significance, and others for Best Practice Examples. We receivedmany examples from all of you, demonstrating that Family/ProfessionalCollaboration is indeed alive and well. We used as many suggested programsas we could, but all of the submissions shaped and influenced the thinkingexpressed in the monograph.

The ideas for this monograph also come from the work and publications ofseveral groupsthe Federation for Children with Special Needs (Boston),the Families as Allies Project (Oregon), the Association for the Care ofChildren's Health (Washington, D.C.), and Parents Groups throughoutthe country. Many other groups, too numerous to mention, have influencedour thinking about collaboration.

To all of you, we acknowledge your contribution and thank you for yourencouragement and support.

There is no limit to the creative potential a collaborative relationship has tooffer. We all have experienced it. We hope this monograph will help othersto develop and experience great collaborative relationships.

Kathleen Kirk BishopJosie WollPolly Arango

6 Family/Professional Collaboration for Children with Special Health Needs and 'Their Families

From the Director...

In 1989, amendments were enacted to the Title V MCH Grant(MCH Block Grant). These amendments defined a national agenda forchildren with special health needs and their families based on new socialpolicy. Why such a broad national movement? Simply stated, data andstatistics tell us that children and families are disproportionately at risk.The litany of economic and social ills and assaults on families' abilityto lead healthy, productive lives is increasing; conversely, permanent,stable services and supports needed by families are increasinglyfragmented or not available. There is a common agenda to rebuildnot just the economic infrastructure in this country but also the humanservices infrastructure for the delivery of health, education, social, anda variety of other services for children and their families.

I came to the Federal bure iu in 1977 and had the privilege of engagingin a national consensus process which involved an exciting array offamilies and professionals. From those many studies, reports,conferences, workshops, and individual conversations, a new paradigmhas emerged. We have recognized the critical role of families in theirchildren's lives and have learned to see ourselves as service and supportpersonnel. The paradigm shift requires new ways of working betweenfamilies and the many agencies, professionals, and others who interactwith and influence their lives.

Kathy Bishop, one of the authors of this monograph, was also on thestaff of the Bureau and she is the person most responsible for reshapingBureau policy to a family- centered philosophy and for insisting thatfamily/professsional collaboration was the critical focus needed tochange program and practice. She has pursued that professionalinterest at the University of Vermont, and, with an outstanding groupof collaborators, has produced this monograph.

Polly Arango and Josie Woll, the parent authors of this monograph,have been leaders in modelling family/professional collaboration forall of us in numerous ways at the federal, state and local levels. They,along with many other family members in this country, continue tobe partners with us in working toward the best medical and healthservices for children with special health needs and their families.

The monograph dares to go beyond the rhetoric to frame a set ofPrinciples which will influence policy and programs and practices for allof us concerned with the health of children and families. We encourageyou to use and share this valuable resource as we seek to learn new rolesand responsibilities for families and for professionals.

Merle McPherson, M.D., DirectorDivision of Services for Children with Special Health NeedsMaternal and Child Health BureauU.S. Department of Health and Human Services

Family /Professional Collaboration fot-Children with Special Health Needs and Their Families 7

PrefaceThis monograph represents the collective thinking of many parents, familymembers, and professionals as it developed from a series of meetings anddiscussions, formal and informal, which were begun in 1984 at the Divisionof Services for Children with Special Health Needs at the Maternal and ChildHealth Bureau.* It is a continuation of the family-centered philosophy whichis contained in the history of Maternal and Child Health.

The principles of family/professional collaboration include the behaviors, beliefs,attitudes, and values that must be present in a collaborative relationship. Theseprinciples are more descriptive than definitive. They may not be all inclusive,but we have attempted to translate what families and professionals around thecountry have told us is necessary and important in collaborative relationships.

As we reviewed the literatureformal and informal works, books, journal articlesnewletters, correspondence, meeting notes, speeches we were struck by howprofessionals needed to work differently with families in order to allowcollaboration to happen. This call for change within the professional role wasdistributed fairly evenly across the parent/family and professional literature.What seemed to be missing, from the professional perspective, was what effect(s)collaboration might have on professionals within the context of their ownprofessions, agencies, and organizations. Are professionals giving up anything?Then too, there is very little examination of the family role in collaboration. Issomething different required of families? Are families being asked to do more?As we strive toward more collaborative ways of working together, what will bethe cumulative and interdependent effects on families and professionalsandhow do we prepare families and professionals for these new expectations?These are questions that we need v.o continue to explore.

This monograph represents a conscious struggle with language and ideas torepresent the shift in thinking required to collaborate. We experienced that shiftand struggle firsthand. In no way do we believe these words represent the finaldescription of collaboration, but we hope it is a good beginning.

*Formerly named the Habilitative Services Branch, Office of Maternal and Child Health,U.S. Department of Health and Human Services

10Family/Professional Collaboration Tit Children with Special Health Nerds and Their Families 9

IntroductionCollaboration is about children and families. It is for children, family members andprofessionals. We are working to develop collaboration because we want to improvethe quality of life and the health of children and their families.

The reason I want to collaborate is because I wantsomething for my daughter that otherwise would simplynot happen. There's no way I'm going to be able toaccomplish for her the kind of future she wants for herselfand that I want for her without some really powerfulpartners.

(J. Vohs, Parent) *

Collaboration is about how to do it together. It makes sense to work together.It is respectful. Families and professionals have said that it is important, that theyexperience greater satisfaction, that it advances the services for children with specialhealth needs.

It (collaboration] gets back to that child. A child withspecial health care needs is often more complex than atypical child. Therefore the need for collaboration andmaybe complicated kinds of collaboration is paramount.It is critical. I think we always need to come back to thechild, making sure tid he or she has the kind of care thathe or she needs. You can't expect that one person is ableto give the kind of care that a child with complex medicalchallenges needs. Collaboration on behalf of a child withspecial health care needs requires a complex configurationof care-giving.

(P. Arango, Parent)

Collaboration is a way to humanize the service delivery system. It improves theoutcomes for children with special health needs and their families. Collaborationfacilitates s _isfying and effective relationships.

I was thinking of why we should collaborateone beingthat the whole is greater than the sum of its parts, thatthere's something above and beyond the individualpieces. I was thinking of the energy and reinforcementthat goes along with collaboration. This is hard work!With collaboration you get reinforcement, which certainlydoes give one satisfaction. It's really fabulous when youget to a point where it's more than what you everexpected.

(B. Anderson, Parent)

*For more information about any of the people quoted, programs and practice examples, consultPeople and Programs and Readings and Rtrinces.

Family/Professional Collaboration for Children with Special Health Needs and Their Families 11

12

Collaboration is a way of thinking and relating, a philosophy, a paradigm shift,an attitude change. It requires a set of behaviors, beliefs, attitudes, and values.The result is a sense of shared ownership, shared responsibility, shared success.No one can do it alone. Improving the quality of life and the health ofchildren with special health needs and their families requires the collectiveknowledge, skills, experience, and expertise of all family members andprofessionals. It requires that the community and all service systems worktogether to achieve the goals of the child and family.

I work collaboratively with families not onlybecause it's the right way to do things, butbecause it's the most enjoyable, energizingand satisfying way to provide services.

(A. Wallace, Professional)

Collaboration is not easy. It is hard work. It requires receptiveness andopenness. It takes time and energy. It requires commitment. It meansyou are willing to change.

I have always been able to collaborate with theprofessionals involved in my sons' care but notwithout effort. It never came easy. Professionalswere sometimes hesitant because they didn'tknow how involved I wanted to be, as onephysical therapist told me. I asked questions.I walked on into that therapy session. I had tomake that effort to commun,,:ate and becomeinvolved. When there were disagreements,I stood firm on decisions proven best for mysons and, most of the time, convinced theprofessionals. The respect won through thisprocess for both parties has resulted in a verystrong partnership for Shown and Jason.

(K. Pounds, Parent)

Collaboration involves parent and professional, professional and child, parentand parent, professional and professional, agency and parent, federal and stateadministrators, and others. Collaboration will not look the same for allfamilies and professionals. Some collaborative relationships will be simple todevelop, others will be much more complex and demanding. Collaborationmust be developed between and among all of us.

1lFamily/Professional Collaboration for (7hrldren with Spectal Health !'reds and Thor Famthes

...rasa

14 Family/Professional Collaboration fi Children with Special Health Needs and Their Families

Principles ofFamily/Professional Collaboration

Family/professional collaboration:

1

23456

promotes a relationship in which family members andprofessionals work together to ensure the best services forthe child and the family;

recognizes and respects the knowledge, skills and experiencethat families and professionals bring to the relationship;

acknowledges that the development of trust is an integralpart of a collaborative relationship;

facilitates open communication so that families andprofessionals feel free to express themselves;

creates an atmosphere in which the cultural traditions,values, and diversity of families are acknowledged andhonored;

recognizes that negotiation is essential in a collaborativerelationship; and

7 brings to the relationship the mutual commitment offamilies, professionals, and communities to meet the needsof children with special health needs and their families.

1.1

Family /Professional Collaboration for Children with Special Health Needs and 'Their Families 15

Family/Professional Collaboration Promotesa Relationship in Which Family Members andProfessionals Work Together to Ensure theBest Services for the Child and the Family.

In order to ensure the bestservices for the child and family,families and professionals need

to develop a relationship within whichthey can work together. This workingtogether aspect of the relationshipcannot be taken for granted, but mustbe intentionally and carefully built andnurtured by professionals and familiesalike.

Collaborative relationships mightbe compared to team building. A teamdevelops through time spent togetherlearning each other's strengths andabilities, I. ruing when to give and whento stand back. If we are able to developa strong team committed to working onbehalf of my child and family, I believewe will experience better outcomes.

(K. Witkin, Parent)

The notion of working together mayseem too obvious to elaborate upon;yet, too often, when the families ofchildren with special health needs seekservices and become involved inrelationships with providers, theybecome the recipients of the services,rather than partners in the design,implementation, and evaluation of theservices. If families and professionals arestriving to work collaboratively, nolonger can professionals do somethingto families. We must be engaged aspartners.

Our attitudes really make adifference in our relationships. Asprofessionals, we must relate to parentsas equal partners, and we have to becomfortable in our role as consultants tothe parents, recognizing that they areultimately responsible for making themajor decisions regarding the care oftheir children. It is important to respecteach other, including our differences,and recognize each other's values.We must have compassion for eachother as well as the children.

(S. Handtnaker, Professional)

When family members andprofessionals work together to developand ensure the best services for childrenand families, they demonstrate a shift inphilosophy, a new way of relating toeach other. They become partners,sharing the responsibility, the fears, thejoy, the satisfaction that comes fromworking in partnership. Does anyonegive up power and control? Perhaps!Does anyone compromise? Perhaps!But does the bottom line, doing whatmakes sense for the child and family,ever change? No. As long as everyoneinvolvedchild, family, professionalsunderstands and shares that commongoal, then the flexibility and liquiditycritical to any relationship can work itsmagic.

1j

Family/Professional Collaboration for Children with Special Health Needs and Their Families

18

How do such relationshipsdevelop? We believe that, even in the,:ontext of a traditional system of healthcare, opportunities arise for parents andprofessionals to interact in ways that,slowly perhaps, interrupt old patterns,connect with new ideas, andcommunicate a mutuality of interest.

(C. Hassler, Professional, andN. DiVenere, Parent)

Families who have children withspecial health needs engage in manyrelationships with professionals over along period of time. Therefore, it isimportant for administrators andsupervisors to understand that thedevelopment of a collaborativerelationship takes time a-id may appearto be less efficient in the short run.Working together initially may consumeconsiderable time and energy as theelements of collaboration, such asdeveloping trust and demonstrating arespect for cultural traditions, areworked out. In the long run, however,energy and dollars invested incollaborative relationships will not onlycontribute to ensuring the best servicesfor children and families, but will alsosupport the work of the professionalpartner.

Our kids are not very likely tobe cured, so we really want long-term,productive relationships.

(B. Anderson, Parent)

16

PRACTICE EXAMPLES

FAMILYWhen we brought Elsie home from thehospital, there were ongoing issues ofconcern. One of these issues had to dowith her nutrition and the balance ofsome basic elements in her body. WhenI asked my pediatrician about it, he said:"I'm not sure what I'm looking for;who should I call to find out?" It waswonderful. I referred him to one of herphysicians from the hospital and I wasall set. He didn't question the issueI raised and he was honest in response.I felt like we were working with Elsietogether. (Megan Sutton, Parent toParent of Vermont, Middlebury,Vermont, 802 545-2475)

COMMUNITYUn Buen Comienzo/A GoodBeginning (UBC) offers daycare andtherapeutic services to young childrenwith special needs and their families.This program is part of the RosemountCenter, a bilingual and multiculturaldaycare which encourages peerinteraction and socialization among allchildren of various ages ranging fromfour weeks through five years. Thedevelopmental curriculum is enrichedby the intertwining of multiculturaland bilingual components. In ourview, partnerships with team membersinvolved in program planning forchildren enrolled in our program are asimportant as the work accomplishedthrough the services we provide; ofcourse the family is placed at the headof this team when it comes to decision-making and advocacy issues. We alwaysassume that the fan ily knows what isbest for their child ..nd will advocatefor him/her in al. situations. ManyHispanic families in our program haverecently immigrated to the UnitedStates and are not fluent in English.

FamilVProfessional Collaboration for Children with Special Health Needs and 'Their Families

We have found that these families oftenwant the UBC staff to take a lead roleinitially in creating the child's programplan. As team leaders we then adoptthe role of advocat,- for the familyand help empower them to becomeadvocates for their children. (IsabellaLorenzo-Hubert, M.Ed., and LauraVaughan, M.Ed., CCC-SLP, Un BuenComienzo Program, RosemountCenter, Washington, D.C.,202 265-9885)

STATE PROGRAMIn the State of 'Florida, in order todevelop training that will focus oncollaboration, communication, andgrowth, for both Children's MedicalServices (CMS) staff and Floridafamilies, CMS has created a state parentconsultant position. This parent willassist our 20 statewide district CMSoffices in designing a more sensitivesystem of delivery including "familyrooms" riot "waiting rooms,"information bulletin boards, familylibrary, etc. (Michele S. Kern, R.N.,Program Administrator, Children'sMedical Services, Tallahassee, Florida,904 488-5040)

NATIONAL PROGRAMThe Alliance of Genetic SupportGroups is a coalition of consumers,professionals, and voluntary geneticsupport groups, developed so thatfamilies and health care professionalscan work together to address theneeds of individuals and familiesaffected by genetic disorders from anational and cross disabilityperspective. The Alliance believesthat the beginning of a true workingrelationship, the essence ofpartnership, can be realized throughthe full integration of consumersinto the regional Genetics Networks.These networks work to improveaccess to and quality of geneticservices. They identify needs,share resources, and enhancecommunication and coordinationamong states within each region.(Jayne Mackta, President, and Joan0. Weiss, Director, Alliance ofGenetic Support Groups, ChevyChase, Maryland, 1 800 336-GENE)

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Family/Professional Colhtboration fin. Children with ,penal Health Needs and Their Families 19

PRINCIPLE

Family/Professional Collaboration Recognizesand Respects the Knowledge, Skills andExperience that Families and ProfessionalsBring to the Relationship

amilies and professionals bring

experienceknowledge, skills, and

experience to a collaborativerelationship. In the past, familieswere often considered the receiversof professional expertise, withoutacknowledgement of the unique andvaluable contribution they make. Thecollaborative model recognizes theexpertise of all the people involved incaring for a child with special health needs.

Professionals and consumerscan often both be considered experts.In genetics, as in many other fields,a consumer's life experience andknowledge are essential to making gooduse of the scientific information andclinical experience of the professional.Now more than ever, there is a need tofoster a partnership between professionalsand consumers and break down barriersto communication.

(). Mackta, Parent)

With their knowledge regardingcertain aspects of a child's condition,professionals at times may lose sightof the fact that the family is the centerand the constant in the child's world,whereas professionals move in and outof the various service systems. Thefamily is intimately familiar with thestrengths and abilities of the child, thechallenges of providing care and theneeds of others in the family. Thisknowledge is critical to the successof any health care plan.

13

For a number of years, theattitudes of professionals working withfamilies have seemed to say, "Tell uswhat your problem is and we'll fix it."The professionals were in a sense incontrol. We professionals need tochange our orientation. We need toreframe that question to ask simply"How can we help you ?" We need tobegin to view our work with families asci partnership in which we are theconsultants but the families are in charge,and it is on the care of their child thatwe are in fact consulting them.

(K. Barnard, Professional)

Each member of the team, familymember or professional, brings anexpert body of knowledge, skills, andexperience to the relationship. Whetherin a team meeting, during a home visit,at a doctor's office, or in a schoolsetting, everyone must be encouragedand nave an opportunity to expressopinicots and work together. It isimposs'ble to develop a plan thatensures the best services for the childand the family without participationfrom all members of the team.

Collaboration and :Jeing a portof it all has enabled us (and others) tomodel for our daughter Cassilly how toproblem solvethat everyone's pointof view needs to be listened to andrespectedthat her "solutions" are valued(and often have been the ones selected).

guess that she, in increasing ways asshe got older, has had not only choicesbut she shared in the responsibility ofensuring the best results.

(.J. Wall, Parent)

Family/Proftssional Collaboration for Children with Special Health Needs and "Their Families

Building on the experience of familiesand professionals who have workedtogether on issues related to a specificchild is an excellent basis for work inthe program and policy arena.

Collaboration has proven to bean exciting and powerful model foreffecting national policy. I think the direct,honest realism families share with federalagencies makes it imperative werespond. We cannot use bureaucraticgameplaying and regulc`ory barriers toavoid action. It may be as dramatic asa family who helps change policy byappealing to the U.S. President to waiveregulations which prevent them fromtaking their child home from the hospitalor as subtle as the quiet, effectivepresence of families on the FederalInteragency Coordinating Council.

(M. McPherson, Professional)

Such opportunities for collaborationto improve programs and policies existat the community, state, and nationallevels. Families and professionals canpool their knowledge, skills, andexperience to initiate changes thatreflect a family-centered approachto services.

PRACTICE EXAMPLES

FAMILYIt was in July, 1991, that I asked to seemy daughter Bridgett's records whileshe was being cared for on the PediatricUnit. Permission denied! How was Iexpected to care for my daughter on theweekend without knowing in detailabout her care the previous five days?Was her new antibiotic started? Had shestopped vomiting and if so, when? Washer food staying down better? Fourmonths later, after a series of lettersexplaining the need for parents tohave access to their child's records,

the pediatric facility conducted atraining, changed their policy andnow encourage parents to read andwrite notes in their child's records.(Maureen Mitchell, Regional Coordinator,Vermont Parent to Parent, Pownal,Vermont, 802 823-5256)

GRANDPARENTSGrandparents can lend a type of

strength and support to family membersthat no other generation can, lust throughtheir own experience and wisdom.

(J. Ratner, PACER Center)

In an effort to reach an underservedpopulation that also is challenged bythe birth of a child with a disability, aGrandparent-to-Grandparent programis being piloted through the PACERCenter. The program goals are to:

allow grandparents of children withspecial needs to share their concerns,joy, and interests with othergrandparents;tech grandparents helpful strategiesto support their children and familieswhile caring for themselves;inform grandparents about programsand services available for children withdisabilities and families;support, inform, and empowergrandparents in assisting theirchildren and grandchildren.

Grandparents will be trained to lead thesupport group and will expand a phone-support network for other grandparents.The idea behind the program is to havegrandparents serve as their own bestresources. (Jamie Smith and PaulaGoldberg, Co-Director, PACERCenter, Inc., Minneapolis, Minnesota,612 827-2966)

13

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0-41, e4 A th,

Family/Prqfessional Collaboration fir Children with .Spec i 111 Needs and Their Fannhes

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21

22

COMMUNITY AND HOSPITALThe Family Center in Newington,Connecticut, is a unique example offamily/professional collaboration inthe delivery of family support services.The Family Center was establishedthrough a recognition by theNewington Children's Hospital staffand parents that professionals are oftenunable to provide adequate familysupport services, and parents who haveused specialized health care and otherservices have unique knowledge andexperience to offer families. The Centeris funded through a local, privatefoundation and the DevelopmentalDisabilities Council, and administeredby representatives of the FamilyCoalition Board and representatives ofthe Newington Children's HospitalStaff. The hospital provides significantin-kind support to the project, includingspace, telephones, and secretarial/administrative supports. It also providesaccess to families in need of support.The Family Center enhances thedelivery of family-centered care, bothon-site at the hospital and in thecommunity. Staffed by families, theFamily Center provides parent to parentsupport, information, advocacy, andtraining opportunities for families ofchildren with special needs. (MollyCole, Coordinator, The Family Center,Newington, Connecticut, 203 667-5288)

STATE PROGRAMPilot Parent Partnerships, a statewidefamily network in Arizona, was formedin 1979 to provide support and informationfor parents of children with disabilities.The initial effbrts were strong family/professional collaboration and continuedto be so as the organization grew. Webegan with two parents working fromtheir homes with 15 volunteers to astaff of 14 and well over 400 volunteersin 15 chapters throughout Arizona.

Ali

Our greatest family/professionalcollaboration challenge came when wedecided to write a federal grant. Asfamilies, we had a clear vision of whatwe wanted, but needed lots of help inputting the pieces together. It trulywould never have happened without ourprofessional colle oues who gave theirtime, energy, and expertise to helpfamilies build a strong network. (MarySlaughter, Executive Director, PilotParent Partnerships, Phoenix, Arizona,602 468-3001)

TRAINING PROGRAMProject Copernicus: Promoting thePractice of Family-Centered Carebelieves that both preservice andinservice training can help professionalservice providers deliver their services ina more family-centered way and thattraining is most effective when parentsare engaged as training partners. Asconsumers of services, parents and otherfamily members are uniquely qualifiedto share insights, observations, and ideasthat may not be readily apparent to staff.Parents can and should participate inevery level of training: determiningneeds, designing programs, producingmaterials, conducting sessions, receivingtraining sessions, receiving andevaluating training. (Lisa Maddux,Project Coordinator, ProjectCopernicus, Baltimore, Maryland,301 550-9700)

Family/Professional Collaboration Mr (Inldroi with Special Health Needs and Their Families

Family/Professional CollaborationAcknowledges that the Developmentof Trust is an Integral Part of aCollaborative Relationship

rust means to have a firm beliefor confidence in the honesty,

integrity, and reliability of oneanother. In collaborative relationships,families and professionals need to trusteach other in order to meet the specialhealth needs of the child. This trustvalidates each person's expertise andimplies a shared belief that everyone isinterested in providing the best servicesfor the child and family.

Collaboration requires goingbeyond cooperation (being nice) andtruly working together, in an atmosphereof mutual respect and trust. The climatemust be one in which families andprofessionals feel comfortable honestlyexchanging ideas, as well as candidlyasking questions and sharing concerns.

(S. Dietrich, Professional)

It is important to remember thattrust is something that develops overtime. At an initial meeting, thegroundwork is laid for a trustingrelationship by promoting openness andwillingness to discuss with one another,what each will bring to the relationship.As time goes on, this commitment toan honest dialogue fosters trust.

Soon after Elsie was born, itbecame clear that the Intensive CareNursery staff were as emotionallyinvested in her outcome as we were.Clearly, we were unable to give her thetechnical help she needed at that time,and we weren't there all the time to hugand love her. We entrusted them withher care, emotional and physical, andI have no doubt that by the time she wasdischarged, they loved her as much aswe did, I think the fact that we trustedthem as they trusted us as new parentsgreatly enhanced the care Elsie received.

(M. Sutton, Parent)

A collaborative relationship is atrusting relationship where expectations,hopes, and sometimes dreams are shared.Trust does not require agreement onall issues, nor does trust require perfectsolutions. When disagreements dooccur, it is easier to resolve them withinthe context of a trusting relationship.

Trust is a delicate thing. For me,it is releasing my child and sharing myhopes with the professionals in our lives.It is believing that you are as my sister/brother, that as a professional you areusing your judgment and heart to pushfor what you feel is best for my child, thatwe can disagree, that we respect eachother's knowledge and can meet onmiddle ground.

(D. Sosa, Parent)

21

PRINCIPLE3

Family/Professional Collaboration fir Children with Special Health Needs and Families 23

24

Trust strengthens a relationship. Itsignifies a willingness to have faith ineach other's intentions and acknowledgesshared goals. The relationship createdwhile trust is developing helps familiesand professionals overcome barriers toeffective services.

Our rocky path has beensmoothed to a great extent by our familypediatrician. When we first met, I'mafraid what he saw was two woundedand frightened parents who resented thefact their children would be dependenton a medical svlem that thus far hadbeen something of a disappointment . . .

He offered no judgments on just whatkind of parents he thought we wouldmake and never has. He asked what ourconcerns were and what our goals werefor our children. As simple as that maysound, no doctor had previously askedthose questions, much less waited for ananswer.

(S. Thorson, Parent)

Professionals have a specialresponsibility in the development oftrust. They may be strangers to thefamily, yet they play an important rolein meeting the health needs of the child.Additionally, since families may feeldependent on the services beingprovided, they may be hesitant to placethemselves in a vulnerable position.Professionals who show genuine interestin the family's and child's well being,who are accessible, and who arecommitted to honest communicationfoster trusting relationships.

Many families view specialistsas unapproachable and would neverdisagree or challenge statements madeby one of them. We have found that,though we seem to get respect from thesewonderful people automatically, we donot gain their trust as easily. . . .Someof the ways that our staff builds trustrelationships are: accompanying thefamily when a referral has been madeto an outside agency as part of theevaluation process, and serve as

22

interpreter; keeping notebooks in eachchild's tubby so that family members andspecialists may exchange dialogues onthe work the child is accomplishing;assi'..ng parents in filling out variousdocuments; and encouraging parents tocall us and let us know how their child isdoing once he leaves our school and isenrolled in the public school system.

(L. Vaughan & I. Lorenzo-Hubert,Professionals)

Trust involves risk. For families, itmeans entrusting the care of their childto others in the belief that they will besensitive to the family's goals andwishes. For professionals, it means thatthey may not meet the expectations ofthe child and family. For both familiesand professionals, it can mean exposingvulnerability. Trust must be earned.Once it is achieved, trust creates anatmosphere in which the dynamicsof the relationship can flourish.

PRACTICE EXAMPLES

FAMILYOur daughter Katie was born withmedical conditions which required anextended hospital stay. When Katie wassomewhat stable and no real progress inthe hospital was being made, we wereapproached about taking Katie home.The doctors, nurses and therapiststrusted us to handle and assess Katie'sneeds on a 24-hour basis. Theyrecognized her need to be in a morenormal and social atmosphere.However, Katie had no access to thehome health care she would requirewithout access to insurance. Werequested that income eligibility limitsbe waived to establish Medicaideligibility under the SupplementalSecurity Income Program. Althoughwe were told "rules arc rules," Medicaiddid .ay that an exception to policyworild be processed; however, no onehad ever received one in the state ofIowa. With the help and support of our

Family/Prpressional Collaboration for Children with Special Health Needs and Their Families

community, we worked to change theregulations which prevented us frombringing Katie home. In collaborationwith Congressman Tom Tauke's office,the hospital social service department,the business office, the PICU staff andour family we established a precedentthat allowed Medicaid to follow Katiehome. On December 19, 1981, Katiecame home to live after three years ina Pediatric Intensive Care Unit. As theresult of our efforts, new FederalMedicaid initiatives were developedwhich allowed cases to be evaluated onan individual basis. By April 1982, theDepartment of Health and HumanServices, realizing the enormity of thecases filed, established three options forstate Medicaid programs known as theKatie Beckett waivers. (Julie Beckett,Program Associate, CAPP Project,University of Iowa, Cedar Rapids,Iowa, 319 356-4294)

PROFESSIONALIt can be difficult for medicalprofessionals to support familiesespecially when they choosenonconventional ways/approaches withchildren. I acknowledge and respectthat parents have a right to makedecisions about their children's care andthat professional intervention is notnecessarily a given. This idea can bechallenging to the medical professionbecause we don't understand that afamily may not choose to use all theservices in the formal service network.I try to find out how this family hashandled crisis in the past. Who helpedthem? Who were their supports? Insome situations informal interventionmay be more effective than the formalsystems we have developed. (W. CarlCooley. M.D., Dartmouth-HitchcockMedica, Center, Lebanon, NewHampshire, 603 650-7884)

STATE PROGRAMI think the first tangible evidence weever had that the system respected andtrusted our ability to care for Meredithwas with the Family Support SubsidyProgram. They respected my need foras much simplicity as possible by makingthe application process easy, i.e., a one-page application form and clear-cuteligibility requirements. Theyacknowledged my need for multiplesupports by making the funds non-taxable and excluding the funds fromincome when applying for any otherprogram. Most importantly, though,they demonstrated trust in me as a well-informed and prudent judge of myfamily's needs by placing no constraintson how the money is used. It's up to usto simply cash the check and buy respite,diapers, prescriptions, equipment,clothing, or anything else our familyneeds. (Beverly McConnell, Director,Parent Participation Program,Department of Public Health, Lansing,Michigan, 315 256-3684)

ADOLESCENTS/HOSPITALThe objectives of the Family AutonomyProject are to: 1) ensure the participationof families in planning for the healthcare of their children, 2) modify staffbehaviors and institutional practicesto promote family autonomy, and3) broaden service goals so that theyinclude health maintenance and futureplanning for adolescents with specialneeds. Trust has been developingthrough participation between familiesand professionals on various committees,such as the staff-initiated Parent-InterestCommittee which reviews and actson parent and staff concerns at theCenter. Parents have a direct impacton decision-making for all plans andactivities at the Center. (Sharon L.Hostler, M.D., Project Director, FamilyAutonomy Project, Charlottesville,Virginia, 804 924-8174)

23

Family/Professional Collaboraton for Children with Special Health Needs and Their Families 25

-111.41.

A

26

F y rofessional Collaboration FacilitatesOpen Communication so that Families andProfessionals Feel Free to Express Themselves

Communication, verbal andnonverbal, is the primary

manner in which we relate toeach other. Communication has anexpressive aspect, such as talking, usinga communication board, and signingand a receptive aspect, such as listening,attending to the signs and signals, andunderstanding. For children withspecial health needs and their familiesand the professionals they workwith, communication is the waywe understand each other andshare ideas and goals.

We as professionals must rememberthat it is the parents who know their childand who can tell us about the child. True,we may have technical knowledge aboutgross motor and fine motor development,but unless we can communicate with theparents and really know what is going onwith the child, our recommendations maynot be appropriate or may never beimplemented because of miscommunication.

(E. Yamane, Professional)

Effective communication is thecornerstone of successful collaborativerelationships.

Instrumental to increasing thefamily's ability to cope with theconsequences of an illness or disabilityis open communication among membersand between the family and health carepersonnel. Distorted, unclear, anddisqualifying messages tend to generateconfusion, tension distanc, and evenalienation.(K. Ell and 1-1. Northen, Professionals)

24

In health care situations, theprofessional may wish to protect thechild and/or family from pain orsadness, leading to a lack of opennessin communication. While theprofessional may have good intentions,the family must have access to allavailable information about their child.Sometimes professionals do need tocommunicate painful information.In these situations, the decision isnot whether to give the informationto the family but rather how to give it.

I vividly remember the first timeI met Elsa [a professional advisor to theTreacher Collins Foundation] herapproach toward me then, as now,was warm and welcoming; she seemedunhurried, energetic, respectful, andhonest toward my concerns. Shedisplayed on uncanny ability to ask theright questions of me so that I could askthe right questions of her. I ler' ourmeeting feeling exuberant . . .myperspective about my son's potential, hisfuture, and that of our family changeddramaticol:;,' during this conversation.

(H. Charkins, Parent)

Collaborative relationships arecharacterized by dialoguean ongoingeflbrt by all persons to discuss the issuesand concerns at hand, to exchangeinformation, provide feedback, sharereactions and ideas, and create solutions.If the family's first language is notEnglish, this dialogue should beconducted in a manner that makes iteasy for families to express themselves.

1.amslv/Proftsssonal Calb,Itoration for Children with Special Health Nerds and 'Their Families

With the Latino culture that I workwith, much importance is placed on aperson's capacity to observe his/herenvironment. That capacity goes beyondthe words a person speaks and takes intoaccount body language and presence.It is important for the professional workingwith Latinos to understand the way weinteract with the environment, that evenwhen the family does not speak the samelanguage, their culture and heritage haveprepared them with other ways ofreceiving information by the messagesprofessionals send to them. It is on thebasis of that information that the parentswill develop their judgment on the qualityof care their children are receiving.

(C. Santiago, Professional)

Central to developing a dialogue islistening. Active listeningcheckingout with others your interpretation oftheir statements and listening beyondwords to hear and understand concerns

is hard work.

And when we shared our st---y,he listenedhe really listened. Nointerruptions to be summarizing ourfeelings or using touchy, feely comments.He just listened... he also asked to seeDavid, asked about him by name;I remember us standing around the criband how we all talked about David asa person and not necessarily just abouthis special needs.

(P. Nishimoto, Parent)

Sometimes professionals feel that theyare communicating with families andgiving them information. But, inreality, the exchange is one-sided andineffective. There also may be timeswhen families are not clear in theircommunications with professionals,for examp;e, in the areas of preferencesfor services or support. Developing arelationship which facilitates clear andopen communication is crucial to thecollaboration needed to fulfill childand family gc 's.

Now when I think back, manyof the things I said and did were notsmooth, nor was I learned or smart.I made mistakes. But it was my authenticsense of outrage or frustration that didcarry the impact, clumsy or not. I amthankful to the professionals who listened,who heard beyond the lack ofcorrectness and style, and appreciatedthe message. My remarks did make adifference. I know this becauseprofessional. ..'ould say to me, evenyears later, that they were somehowmoved to action by them.

(J. Vohs, Parent)

PRACTICE EXAMPLES

FAMILYWe had wonderful modeling of a greatcommunication approach when myson was young. Our neurologistwould meet with us all together andthen near the end would say, "NowMichael, I want to talk with yourparents alone for a few minutes andthen with you alone." There were anumber of worrisome things happeningneurologically at that time and we hadquestions and concerns that we asparents wanted to clarify Leforetalking about them with Michael. . . .

it also took into account that Michaelhimself . night have some personalquestions. . . .and would be aparticularly good approach as childrengrow to assume their own care. (BetsyAnderson, Director, CAPP, NationalParent Resource Center, Federation forChildren with Special Needs, Boston,Massachusetts, 617 482-2915)

25

Family/Professional l'ollaboration Tr Children with Special Health Nerds and VIII,' Immiltes 27

SISTERS AND BROTHERSThe goal of the Sibling Support Projectis to increase the number of peersupport and education programsthroughout the United States. One ofits activities has been the developmentof the Sibshop Model which offersbrothers and sisters of children withspecial health care needs opportunities:

to meet other siblings in a relaxedrecreational setting;to discuss common joys and concernswith other siblings;to learn how others handle situationscommonly experienced by siblings ofchildren with special needs; andto learn more about the implicationsof their brothers' and sisters' specialneeds.

They also provide parents with anopportunity to learn more aboutcommon concerns of brothers andsisters. (Donald Meyer, ProjectDirector, Sibling Support Project,Children's Hospital and Medical Center,Seattle, Washington, 206 368-4911)

SCHOOLLongview School in central Phoenix,Arizona, has a large percentage ofHispanic students. The staff of theschool make a strong effort to meetthe needs of these students and theirfamilies. In the area of health andmedical needs. the school nurse and thehome-school liaison, who are Spanish-speaking, are available to help familieswith children with special health careneeds: access medical evaluations, towork with teachers to make classroommodifications, and to connect parentsto parent organizations with Spanish-speaking support parents. (Eduarda Rosh,R.N., School Nurse, Longview School,Phoenix, Arizona, 602 264-2665)

2k)

TRAININGMedical Education Projects, Hawaii,New Mexico, Vermont, Wisconsin.As part of an effort to develop adialogue between parents and physiciansconcerning quality health care forchildren with special health needs,medical students in pediatrics are invitedto spend time in the homes of familieswho have children with special healthneeds, listenir.g and learning about thechild within the context of the family.Medical students arc: not meeting withfamilies as expert physicians, but ratherto understand the knowledge, skills, andvalues that families bring to the family/professional relationship. Otheractivities may include lectures anddiscussions between families andprofessionals within the medical schoolsetting. Hawaii, New Mexico,Vermont, and Wisconsin are examples ofstates with medical education projects.(Consult the Family/ProfessionalCollaboration Resource List onpage 43 for contact persons.)

STATE PROGRAMA local government project begunin 1983 in Texas, established theCommunity Information Services(CIS). The State Department ofHuman Resources' Houston officeworked with the Houston PublicLibrary system to develop a modelinformation service. Now funded byUnited Way, the United Way Helplineuses a computer-:-)ased data bank tr,answer telephone inquires aboutinformation and services. Telephonelines maintained by the United Way arestaffed by bilingual workers who havereceived special training. (Pam Perez,United Way Helpline, Houston, Texas,713 957-4357)

78 Famtiv/Prolessional Collaboration fir Children with Special Health Nerds and Their Families

Family/Professional Collaboration Creates anAtmosphere in Which the Cultural Traditions,Values, and Diversity of Families areAcknowledged and Honored

pr amilies of children with specialhealth needs are represented

among the great variety of culturesin our country. Many families face theadded challenge of dealing with systemswhich may not understand or supporttheir language, beliefs, traditions, orways of life.

Each family is unique andself-defining, an exotic culture with alanguage, a style, and rhythm unlikeany other's.

I-eeman, Professional)

One of the greatest challenges facedby families and the professionals theycollaborate with is to understand eachother: why we talk as we do; why webehave in a certain manner; how we makedecisions; how each of us views children ingeneral and children with special healthneeds in particular; how past experiencesand cultural traditions affect the thinkingand actions around a child's health care.This does not mean to intrude on thefamily's privacy. Nor does it imply that aprofessional should ask too many questionsabout family life. Instead, it means that anatmosphere is created in which the familyis respected for who they are and for theircommitment to their child.

In spite of the problems with thelanguage, one has to ask questions. It

was very difficult for me in the beginning,but the people at the hospital reallyhelped, and I know that I helped themtoo. I go to the appointments becausethey take me seriously when I speakabout my children's conditions.

(L. Davila; Parent)

What does it mean to havecollaborative relationships which aresensitive to and honor the diversebackgrounds of families from differentcultures? According to Cross (1988),sound cross-cultural practice includesfive essential elements: an awarenessand acceptance of difference, anawareness of the influence of theprofessional's culture on how she orhe thinks and acts, an understandingof the dynamics of difference in thehelping process, knowledge of thefamily's culture, and the ability to adaptpractice skills to fit the family's culturalcontext. This work on honoringdiversity through cross-cultural practiceis an important responsibility forprofessionals, and is a process that iscontinuous and occurs over a lifetime.

Acceptance of the fact that eachculture finds some behaviors, interactions orvalues more important or desirable thanothers can help [professionals] interact moresuccessfully with members of differentcultures. Awareness and acceptance ofdifferences in communication, life view anddefinitions of health and family are criticalto successful outcomes.

(1.S. Gallegos, Professional)

27Family/Professional Collaboration fbr Children ?Pith Special Health Needs and Their Families 29

Families who arc caring for a childwith special health needs often findthemselves drawing on their culturalheritage for comfort and as a meansof finding their way. These familiarcourtesies and traditions can becomestarting, resting, or decision-making safehavens. If professionals are able todemon,trate to the family a willingnessto be respectful, families will showprofessionals how to provide servicesand support in a way that is acceptableand meets the family's needs.

When a serious decision must bemade, we talk it through with extendedfamily members or listen to our elders.Then, together we decide what is best forthe child. Some doctors get upset with us

if we do not make an immediate decisionon the treatment they recommend for ourchild. But others respect our cultural wayof making decisions. They invite familymembers to take part in the discussionand give us time to decide what makesit much easier for us. Our traditionalways are important to us, and werespect them.(American Indian Parent Group)

Creating an atmosphere in which thecultural traditions, values, and diversityof families are acknowledged andhonored goes beyond the practice level.Professionals need administrativesupport to collaborate in culturallysensitive ways. Some examples of thisadministrative support include hiringpractices which include people of diverseethnic groups, access to specialcommunication techniques, and stafftraining by families and professionalsrepresentative of the various culturesbeing served.

Developing collaborative relationshipswith families is a way of helping allfamilies gain access to services. This isespecially significant in working withfamilies from various cultures. Thismeans, among other things, havingprofessionals who speak the fistlanguage of the family, meeting in a

place which is comfortable for familymembers, and learning the particularcustoms that arc a part of the family'sculture.

I have always been a strongbeliever in the importance of outreach formany reasons. I think outreach such asmeeting in people's homes, certainly cancontribute to a collaborative relationship.I'm not saying you have to go to someone'shome to collaborate, but I am saying thatreaching out and asking how a familywants to work with me is a way tounderstand better the family's experience,and journey.

(P. Weaver, Professional)

PRACTICE EXAMPLES

FAMILYAfter two years of being home with myson, I'd reached my limit. I knew hewould be entering the public schoolsystem soon, but I needed time now aswell as a foolproof transition processfrom the early intervention program tospecial education fbr both of us. I

requested that the two transitionspecialists from my son's program gowith me to meet the director of thechild development center in ourcommunity. They met me at my homeand walked to the program with my sonand me. We talked with the director asa team, they helped me articulate mythoughts. They even took turns takingcare of my son while we were there sothat I would not he distracted. Last, butnot least, they made themselves availableshould the center need further informationto better mainstream him into aprogram with no child diagnosed withany special health care need or disability.We were a team working for the benefitof my family. They supported methroughout the entire enrollment process.They were my partners, they are myfriends. (Gail Johnson, Parent NetworkCoordinator, National Center for FamilyCentered Care, Bethesda, Maryland,301 654-6549)

23Family/Professional Collaboration jiir Children with Special Health Needs and Thar Farnilie3

PROFESSIONALWhen I work with families I treat eachperson with dignity and respect. Forinstance, when I am called by a hospitalto translate information to a family, thefirst thing I do is to speak with thefamily, explain my role, and ask theirpermission to translate, knowing that Iwill he hearing confidential information.Oftentimes hospital staff do not sec thisas an important step. I try to rolemodel the importance of respecting thefamily, and taking the time to explainthe family's right to confidentiality.(Carlos Santiago, M.S.W., Departmentof Public Health, Northampton,Massachusetts, 413 586-7525)

COMMUNITY PROJECTThe Southeast Asian DevelopmentalDisabilities Prevention Project(SEADD) began out of a concern forthe needs of newly-arrived immigrantfamilies from Southeast Asia settling inthe San Diego County area whosechildren were at risk for or who haddevelopmental disabilities (ages birth-3).There are four immigrant groups servedby SEADD, each of which has its ownlanguage, culture, and distinct issues.These include Cambodian, Vietnamese,Hmong, and Laotian families. Theprogram employs four bicultural/bilingual case managers who weretrained in the project and are from thesame community that they serve. Thereceptionist /secretary speaks enough ofeach of the four languages so that she isable to greet families when they call andrefer them to the appropriate casemanager. Each of the case managers isan immigrant and has experienced thesame hardships of refugee camps anddislocation/allocation as families in theprogram. The case managers helpbridge the gap between the servicesfamilies need and the network ofservices that arc available to them in thecommunity. (James 0. Cleveland,Ed.D., Director, SEADD, San Diego,California, 619 576-2965)

STATE PROGRAMTo help improve the statewide systemsof care for American Indian childrenwith special needs, SouthwestCommunication Resources, Inc., acommunity-based agency, sponsored aconference to stimulate dialoguebetween American Indian parents andprofessionals providing services toIndian children. Participants weredivided into three work groups, eachhaving an equal mix of Indian parentsand professionals and addressed thefollowing topics: How can Indianparents and service providers worktogether productively and comfortably?How can early intervention servicesbe provided to Indian families in aculturally appropriate fashion? Howcan Indian families be assisted in orderto access the wide range of servicesfor their children? Informally, allparticipants reported an increasedunderstanding and appreciation of theissues. Participant recommendationsincluded increasing Indian parentrepresentation at all phases of planning;establishing a program of ongoingtraining for American Indian parentsand advocates; orientation and on-the-job training on how to provideculturally responsive services; developingfamily service plans that are family-focused and culturally responsive;improving coordination among local,state and federal agencies servingAmerican Indian children with specialneeds. (Randi S. Malach, TrishThomas, Pathways to UnderstandingProject, Southwest CommunicationResources, Inc., Bernalillo, NewMexico, 505 867-3396)

2JFamily/Professional Collaboration fin. Children with Special Health Needs and 'Their Farni:ies 31

-'

Family/Professional CollaborationRecognizes that Negotiation is Essential in aCollaborative Relationship

by is the ability to negotiatesuggested as an essential

component of a collaborativerelationship? In some ways, allrelationships involve a series ofnegotiations. In the process ofachieving the best and most family-centered services for children withspecial health needs and families, itseems inevitable that disagreements willarisebetween family and professional,between professional and professional,and perhaps among family membersthemselves. When disagreements occur,then negotiation must take placeequals negotiating with equals!

As a parent, I need to feel fromyou that my child's life is as important toyou as it is to me. That you value andcherish his individuality. That you arewilling at times to stand back so that hiswings may spread or at other times tocome and encircle him. But to alwaysremember the possibilities and thehopes that are in his eyes and in myheart. That you may not always agree,but we will work it out.

D. Soso, Parent)

Negotiation is a process of laying onthe table the different options, priorities,and preferences of all team members.It means developing a plan to meet theneeds of the child and family. The goalof negotiating is always to find the bestsolutions for children and families.Flexibility is essential.

In my son's life, our team of familyand professionals is a critical factor inproviding the support which allows Joshuato five and function in his community. As ateam we have not always agreed but,because we have learned to trust andrespect each other's expertise, we areusually able to reach consensus.

(K. Witkin, Parent)

According to Pinderhughes (1989),mediating and resolving conflict can becritical in preserving relationships andpreventing relationship breakdown andisolation. In mediation, work is directedtoward the best outcomes for the child,not on the differences between andamong individuals. Empowermentefforts are directed toward the relationshiprather than toward any one individual.

My son's physician is great! Wework together to meet my son's needs. Ifwe are not sure how to proceed on anissue, I might say: "Why not try this."And he listens to me!

(L. Lemons, Parent)

Family/Proftssional Collaboration for Children with *tint Health Needs and %heir Families

Negotiation and compromise can beseen as activities that encourage growth.Over time, issues may need to benegotiated more than once. These newnegotiations may result from a numberof factors including the changing needsand wishes of the child and family, newinformation, new and changing resourcesin the agencies, and new technologies.

We (professionals] need to realizethat we are not going to be able to haveone approach or one program or one setof parent meetings that fits every parent.We're not going to be able to demandthat they meet those kinds of expectations.

(L. Vincent, Professional)

Simple negotiations may involve moreconcrete issues such as times, places, anddates for meetings. More complexnegotiations may involve the resolutionof differences of opinion over moreserious challenges in service delivery,such as disagreements over the need formedications, the number of respitehours needed, and professional style ofservice delivery. The ability to negotiateis crucial to collaboration.

Collaboration is also necessarybecause among other reasons neither theparent nor the professional possesses amonopoly on the truth, and each canserve as a check on the shortcomingsand limitations of the other. But beforea partnership can genuinely exist, theremust be give-and-take, mutual respect,and something like moral and culturalequality. Both the parent and theprofessional must attempt to understandthe other's point of view, special moralconcerns, and culturally determinedpriorities of the child.(J. Gleidman and W. Roth, Professionals)

PRACTICE EXAMPLES

FAMILYOur son Mark had multiple orthopedicsurgeries throughout his life, invO:vingmuch collaboration among variousprofessionals and our family. Thegreatest challenge to these collaborativeefforts came when Mark needed anothersurgery after turning the magical "legal"age of 18. Not only were wetransitioning from pediatrics to an adulthealth care system, but Mark was nowthe legally responsible party. He signedall consent forms, negotiated withhealth care providers, and made his owndecisions about anesthesia induction,pain management, etc. It was a newexperience for my husband and me,letting go of control, but for the healthcare team who also needed to makeadjustments. Mark became one of thecollaborators, with support from hisfamily, and the professionals tookanother step toward partnership.(Betsy Trombino, Program Director,Pilot Parent Partnerships, Phoenix,Arizona, 602 468-3001)

FAMILY, SCHOOL ANDCOMMUNITYNegotiating for services in a ruralcommunity in Mississippi involvednetworking parents at the local level tocommunicate the needs of their childrento educators in the local school district.This negotiation began with parentsdiscussing the needs of their children.These needs were taken to the programdeveloper of the local school district.Within two weeks of communicatingwith the program developer, childrenwho had been traveling eighty miles oneway for education and therapy beganreceiving services in their community.The development of these services inBenton County, Mississippi resulted inawareness in the community andimproved communication andcollaboration among parents andprofessionals. Negotiation doesn't endwith the development of services. Any

31Family /Professional Collaboration for Children with Special Health Needs and Them Families 33

change in services requires negotiation.Therefore, communication andcollaboration cannot be overemphasized.Always rememberjust because someonesays no doesn't mean it can't be done.Persistent negotiation utilizing factualinbrmation and positive advocacy canbring about not only services, but a goodworking relationship for continuing andimproving services. (Kathy Tullos,Executive Director, Advocates for theExceptional, 601 656-9345, Philadelphia,Mississippi, and Linda Li.--nons, currentlyin Memphis, Tennessee, 901 353-2019)

EARLY INTERVENTIONPROGRAMAt the Sultan School this year we offeredlimited home-based services on a pilotbasis. However, we also explained tothe families the amount of time we hadavailable to provide these services. Wewanted families to help us determine theeffectiveness of the pilotin terms ofquantity, quality, and need. The resultsfrom this small experiment in negotiationand compromise has shown us thatfamilies (1) arc willing and eager toparticipate in improving and expandingthe program and that they are consciousof cost-effectiveness; (2) are able toarticulate an overriding preference forcontinuity of services rather than site ofservices; and (3) are partners in tryingto figure out the best way to use thedollars we had. (John Nishimoto, SultanEaster Seals School, Honolulu, Hawaii,808 536-3764)

STATE PROGRAMIn 1991, the Vermont Department ofHealth's Division for Children withSpecial Health Needs (CSHN)undertook the task of reorganizing theway families would purchase prescriptiondrugs for their children. The groupwhich planned the changes was theState Advisory Council for CSHNwhose co-chairs and membership areparents and professionals. Additionally,the parent members were asked to seekideas and concerns from families aroundthe state. The resulting new prescriptiondrug policy represents an importantcollaborative effort between a stateadministrator, parent groups, individualfamilies, and providers. It reflects aprogram that is most responsive andleast disruptive to children and familieswhile still adhering to cost-effectiveness.(Carol Hassler, M.D., Director, Divisionfor Children with Special Health Needs,Vermont Department of Health,Burlington, Vermont, 802 863-7338)

32

Family/Profivional Collalwration for Children with Special Health Needs and 'Their Families

Family/Professional Collaboration Brings tothe Relationship the Mutual Commitment ofFamilies, Professionals, and Communities toMeet the Needs of Children with SpecialHealth Needs and Their Families

Families live in communities.That's where parents work,

where children go to school, andwhere the family attends religiousservices. Community is a place wherewe look for support and services.

It takes a community to raise a child.(African proverb)

While a great deal of attention hasbeen paid to the need for andimportance of a commitment fromfamilies and professionals to childrenwith special health needs and theirfamilies, there has been less focus on theneed for a commitment from communities.According to Hobbs, Perrin and Ireys(1985), community is "the sharedcommitment of a group of people tomutual assistance and the achievementof common purposes."

Our doctor initiated involvementwith the early intervention team and laterthe preschool program. At his request,we have invited him to IEP meetings.He contributes information regarding theboys' medical problems, a perspectiveoften forgotten by educators. And hispresence alone sends a message thatnot only do these parents have acommitment to the development oftheir children, so does their doctor,and so does this community.

(S. Thorson, Parent)

Community can be a neighborhood, avillage, a town, a part of a city, or a city.Community implies mutual caring,common benefits, a shared vision.Families can care for their children withspecial health needs more effectively andwith less stress and frustration if they aresupported by their community ofneighbors.

Community implies sharing theresponsibility to ensure that childrenwith special health needs are includedin all aspects of communit life.

We must continue to work atchanging attitudes through our ownexamples. . . .Everyone, no matter whatcolor, shape, size or disposition, isspecial. In the words of Sarah Lightfoot,"If we would let individual gifts thrive,there would be more possibitay for arich community life."

(S. Peters, Professional)

33Family/Professional Collaboration for Children with Special Health Nerds and Their Families

36

A community commitment can beachieved through the inclusion ofchildren with special health needs in manycommunity activities and organizationsincluding scout groups, preschool anddaycare centers, religious events, andrecreation programs.

A key strategy for strengtheningcommunity support is to increase publicawareness of: 1) the developmentalneeds of children, 2) the specific needsof children with chronic illness ordisability and their families, and 3) themutual rewards of integrating every childand family into community life.

(New England SERVE)

In fact, children with special healthneeds can be full participants in allinformal and formal neighborhoodactivities. In order to achieve theinclusion of children with special healthneeds in the community, parents, healthprofessionals, educators, friends,neighbors, and others must see thatappropriate supportsa ramp at therecreation center, interpreters at thehigh school play, a buddy system inthe summer playground programare available. This commitment bycommunities will assure collaborationamong all the partners who need towork for children with special healthneeds and their families.

At this time, we will celebratethe newborn children in our community.As a community, we recognize that thesebeautiful children are the seeds of ourheritage, fruits of our labor, and the futureof our people. We must care for them,we must protect them, we must educatethem, and we must love them. As acommunity, we must share theseresponsibilities.

(Ghanian "Adinto" Ceremony)

PRACTICE EXAMPLES

FAMILY AND COMMUNITYMoving to a new community wasunsettling for me and my two sons,especially moving from a small ruralcommunity to the city. But this movewas to be a very pleasant experience.After four days, we had gotten to knowalmost everyone on our street. The kidswere coming to the house to play withShawn and Jason. They would go outsidewith them and race their wheelchairs.When I was settled in and ready to startmy new job, the neighbors' childrenwould come to my house and stay withthe boys until their school bus arrived.In the afternoon, the teenagers wouldtake turns about keeping the boys untilI got home at 4:30. I feel this help andunderstanding came easily because whenquestions were asked, answers weregiven. The neighbors felt they couldask questions about the boys withoutfeeling awkward or offending us. Thisopen communication and sharinginformation resulted in support for myfamily and a willingness of the communityto help. With no family in Jackson, theneighborhood soon became our family.(Kathy Pounds, Mississippi Parents andFamilies Network, Jackson, Mississippi,1 800 779-8948)

FAMILY AND SCHOOLCOMMUNITYWhen the tine came for Nick to go tokindergarten, we were strongly urged totake him to town (Albuquerque) wherethe special education services weresupposed to be better. But our otherkids had all gone to the little school inthe village and our family just felt, byinstinct, that Nick belonged here, inAlgodones, where his brother and sistersand friends and neighbors were. It's adecision none of us has regretted. Evenif he was the first child to go to theschool in a wheelchair, he did fine. And

34Family/Proftssional Collaboration for Children with Special Health Needs and 'Their Families

everyone benefited from Nick's presence.(Polly Arango, Co-founder, ParentsReaching Out, Algodones, New Mexico505 867-3660)

COMMUNITY PROGRAMThe mission of the Brooklyn PediatricAIDS Demonstration Project is toaddress the needs of children with theHIV infection, and their families.Family members may often includeextended family and foster care parents.The goals of this project are to:1) promote communication amongpediatric health care and serviceproviders and coordinate and expandmedical, educational, developmental,and social services for an increasingpopulation of infants and children withor at risk for HIV infection and theirfamilies; 2) identify infants, children,and adolescents with or at risk for HIVinfection and their families, in order toprovide appropriate assessment, medicalmanagement, and access to treatment asit becomes necessary; and 3) providecase management and social services inorder to stabilize and support familieswith or at risk for having children withthe HIV infection. Family membersparticipate on all committees thataddress the above goals, and quarterlyluncheons are held to invite families toprovide input regarding services andproject goals. (Sheri Saltzberg,Associate Director, Brooklyn PediatricsAIDS Demonstration Project, Brooklyn,New York, 718 270-1828)

INTERAGENCY/COMMUNITYFamily First is an interagency child andfamily focused screening project for allnewborns and their families living in theLakes Region of New Hampshire.Family First has been funded by theNew Hampshire Infant and ToddlerProject under Part H of the Individualswith Disabilities Education Act (IDEA).The project's goal is to pilot an earlydetection model which links familieswith needed community supports andresources. Parents are offered theopportunity to participate in an ongoingand systematic process of screening andassessment in order to receiveappropriate and responsive referralinformation. Family First offers acommunity based solution to federallymandated child identification activitiesas well as positive connections to childhealth, early intervention, earlychildhood education, and family supportprograms. (Karen Rockhold, YoungFamily Support Program Manager,Community Health & Hospice,Laconia, New Hampshire,603 524-8444)

35Family/Profi7sional Collaboration for Children with Special Health Needs and 'Their Families

Family/Professional Collaboration:People and Programs

38

NATIONAL ADVISORY BOARD

Betsy AndersonDirector, CAPP, National Parent Resource

CenterFederation for Children with Special Needs95 Berkeley StreetBoston, Massachusetts 02116(617) 482-2915

Polly ArangoCo-Founder, Parents Reaching OutP.O. Box 338Algodones, New Mexico 87001(505) 867-3660

Nancy DiVenereDirector, Parent to Parent of Vermont#69 Champlain MillOne Main StreetWinooski, Vermont 05404(802) 655-5290

Isadora Hare, A.C.S.W.Staff Director, Commission on EducationNational Association of Social Workers750 First Street, N.E.Washington, D.C. 20002-4241(202) 408-8600

Carol Hassler, M.D.Director, Division for Children with Special

Health NeedsVermont Department of Health1193 North AvenueBurlington, Vermont 05402(802) 863-7338

Barbara Steele, M.S.W., L.C.S.W.Resource Specialist, Association for the Care of

Children's Health7910 Woodmont Avenue, Suite 300Bethesda, Maryland 20814(301) 654-6549

Joan 0. Weiss, M.S.W.Director, Alliance of Genetic Support Groups35 Wisconsin Circle, Suite 440Chevy Chase, Maryland 20815(800) 336-GENE

josie WollDirector, Infant ProgramSultan Easter Seals School378 Mamaki StreetHonolulu, Hawaii 96821(808) 536-3764

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Family/Professional Collaboration for Children with Special Health Needs and :Their Families

FOCUS GROUP

Cathy Crow, Parent103 Sugar Tree LaneSouth Burlington, Vermont 05403(802) 865-4918

Nancy DiVenere, ParentDirector, Parent to Parent of Vermont#69 Champlain MillOne Main StreetWinooski, Vermont 05404(802) 655-5290

Carol Hassler, M.D.Director, Division for Children with Special

Health NeedsVermont Department of Health1193 North AvenueBurlington, Vermont 05402(802) 863-7338

Cindy Hayman, M.S.W.Child Development Clinic56 Colchester AvenueBurlington, Vermont 05401(802) 863-7315

Michele O'Neill, M.S.W.Division for Children with Special Health

NeedsVermont Department of Health1193 North AvenueBurlington, Vermont 05402(802) 863-7338

Susan Rump, ParentP.O. Box 174Thetford Center, Vermont 05075(802) 785-4029

Carlos Santiago, M.S.W.Family Health and Community ServicesMassachusetts Department of Health23 Service CenterNorthampton, Massachusetts 01060(413) 586-7525

Evelyn Sikorski, M.S.W.Social Services DepartmentMedical Center Hospital of VermontBurlington, Vermont 05401(802) 656-3553'

Megan Sutton, ParentR.D. #1Middlebury, Vermont 05753(802) 545-2475

Janet Vohs, ParentEditor, Coalition QuarterlyFederation for Children with Special NeedsCAPP, National Parent Resource Center95 Berkeley StreetBoston, Massachusetts 02116(617) 4E2-2915

37

Fancily /Professional Collaboration for Children with Special Health Needs and 'Their Families 39

40

RESOURCES

Betsy AndersonDirector, CAPP, National Parent Resource

CenterFederation for Children with Special Needs95 Berkeley StreetBoston, Massachusetts 02116(617) 482-2915

Poll) ArangoCo-Founder, Parents Reaching OutP.O. Box 338Algodones, New Mexico 87001(505) 867-3660

Julie BeckettProgram AssociateCAPP, National Parent Resource Center239 Hospital SchoolUniversity of IowaIowa City, Iowa 52242-1011(319) 356-4294

Hope CharkinsTreacher Collins FoundationP.O. Box 683Norwich, Vermont 05055(802) 649-3020

James 0. Cleveland, Ed.D.Director, SEADD, San Diego Imperial

Counties Developmental Services, Inc.4355 Russin Road, Suite 205San Diego, California 92123(619) 576-2965

Molly ColeCoordinator, The Family CenterNewington Children's Hospital181 East Cedar StreetNewington, Connecticut 06111(203) 667-5288

W. Carl Cooley, M.D.Associate Director of Clinical ServicesDartmouth Center for Genetics and

Child DevelopmentDartmouth-Hitchcock Medical CenterLebanon, New Hampshire 03756(603) 650-7884

Leticia Davila22 Barrett AvenueHolyoke, Massachusetts 01040(413) 536-5217

Nancy DiVenereDirector, Parent to Parent of Vermont#69 Champlain MillOne Main StreetWinooski, Vermont 05404(802) 655-5290

Sharon Dietrich, M.S.W.Family & Neighborhood Services19101 Inkster RoadRomulus, Michigan 48174(313) 941-9590

Susan G. Epstein, M.S.W.Ann B. Taylor, Ed.D.New England SERVE101 Tremont Street, Room 615Boston, Massachusetts 02108(617) 574-9493

Barbara J. Friesen, Ph.D.Center Director, Research and Training

CenterPortland State UniversityP.O. Box 751Portland, Oregon 97207-0751(800) 628-1696(503) 725-4040

Paula Goldberg(,o-director, PACER Center, Inc.Jamie SmithGrandparent Program4826 Chicago Avenue, SouthMinneapolis, Minnesota 55417-1098(612) 827-2966

Stanley Handmaker, M.D., Ph.D.University Affiliated ProgramUniversity of New MexicoSchool of MedicineAlbuquerque, New Mexico 87131(505) 272-3000.

33

Family/Professional Collaboration for Children with Special Health Needs and Their Families

Carol Hassler, M.D.Director, Division for Children with Special

Health NeedsVermont Health Department1193 North AvenueBurlington, Vermont 05402(802) 863-7338

Sharon L. Hostler, M.D.Project Director, Family Autonomy ProjectChildren's Rehabilitation Center2270 Ivy RoadCharlottesville, Virginia 22901(804) 924-8174

Gail JohnsonParent Network CoordinatorNational Center for Family-Centered CareAssociation for the Care of Children's Health7910 Woodmont Avenue, Suite 300Bethesda, Maryland 20814(301) 654-6549

Michele S. Kern, R.N.Program AdministratorChildren's Medical ServicesDepartment of Health & Rehabilitative

Services1317 Winewood BoulevardTallahassee, Florida 32399-0700(904) 488-5040

Carla LawsonExecutive Director, Iowa Pilot Parents Inc.33 North 12th StreetP.O. Box 1151Fort Dodge, Iowa 50501(515) 576-5870

Linda LemonsParent Coordinator, Family Support Group

Project SunshineLebonheur Hospital845 Adams StreetMemphis, Tennessee 38127(901) 353-9481

Isabella Lorenzo-Hubert, M.Ed.Laura Vaughan, M.Ed., CCC-SLPUn Bum Comicnzo Program2000 Rosemount Avenue, N.W.Washington, D.C. 20010(202) 265-9885

Jayne MacktaPresident, Alliance of Genetic Support Groups35 Wisconsin Circle, Suite 440Chevy Chase, Maryland 20815(800) 336-GENE

Lisa MadduxProject Coordinator, Project Copernicus2911 Biddle StreetBaltimore, Maryland 21213(301) 550-9700

Beverly McConnellDirector, Parent Participation ProgramChildren's Special Health Care ServicesDepartment of Public Health343 N. Logan/Martin L. King Jr. Blvd.P.O. Box 30195Lansing, Michigan(315) 256-3684

Merle McPherson, M.D.Director, Division of Services for. Children

with Special Health NeedsMaternal and Child Health BureauPark lawn Building, Room 18A-275600 Fishers LaneRockville, Maryland 20857(301) 443-2350

Donald MeyerProject Director, Sibling Support ProjectChildren's Hospital & Medical Center4800 Sandpoint Way, N.E.Seattle, Washington 98105(206) 368-4911

Maureen MitchellRegional CoordinatorParent to Parent of VermontRD 1, Box 296Pownal, Vermont 05261.(802) 823-5256

John NishimotoSultan Easter Seals School378 Mamaki StreetHonolulu, Hawaii 96821(808) 536-3764

39

Family/Professional Collaboration for Children with Special Health Needs and Their Families 41

42

Patricia Nishimoto, M.S.W.Zero to Three ProjectFamily Health Services DivisionHawaii Department of Health, CSHN

Branch1600 Kapiolani Boulevard, Suite 401Honolulu, Hawaii 96814(808) 957-0066

Beverly Njuguna, M.S.W., J.D.Executive Director, Beethoven ProjectCenter for Successful Child Development4848 South State Street, 2nd FloorChicago, Illinois 60609(312) 373-8670

Donna Gore OlsenProject DirectorIndiana Parent Education Project2107 E. 65th StreetIndianapolis, Indiana 46220(317) 257-8683

Pam PerezUnited Way Help lineP.O. Box 924507Houston, Texas 77292(713) 957-4357

Susan Jeanne Peters, Ph.D.Department of Counseling, Educational

Psychology & Special EducationRoom 333, Erikson HallMichigan State UniversityEast Lansing, Michigan 48824(517) 353-0637

Kathleen PoundsMississippi Parents and Families Network425 Louisa StreetPearl, Mississippi 39208(601) 936-8948(800) 779-8948

Florene Stewart PoyadueC.E.O., Parents Helping ParentsFamily Resource Center for Children with

Special Needs535 Race Street, Suite 140San Jose, Califbrnia 95126(408) 288-5010

Ka ren RockholdProgram Manager, Young Family SupportCommunity Health Agency and HospiceLaconia, New Hampshire 03246(603) 524-8444

Eduarda Rosh, R.N.School Nurse, Longview SchoolPhoenix, Arizona, 85016(602) 264-2665

Sheri SaltzbergAssociate Director, Pediatrics AIDS ProjectSUNY-HSCB450 Clarkson Avenue. Box 49Brooklyn, New York 11203(718) 270-3825/3826

Carlos Santiago, M.S.W.Family Health and Community ServicesMassachusetts Department of Health23 Service CenterNorthampton, Massachusetts 01060(413) 586-7525

Mary SlaughterExecutive Director, Pilot Parent Partnerships2150 E. Highland, Suite 105Phoenix, Arizona 85016(602) 468-3001

Deborah SosaHealth Care Resource SpecialistWashington PAVE12208 Pacific Highway, SWTacoma, Washington 98499(206) 588-1741

Megan SuttonParent to Parent of VermontRD#1Middlebury, Vermont 05753(802) 545-2475

Trish ThomasTraining CoordinatorRandi S. MalachPathways Project DirectorPathways to Understanding ProjectSouthwest Communication Resources, Inc.Bcrnalillo, New Mexico 87004(5O ), 167-3396

Family/Professional Collaboration for Children with Special Health Needs and Their Families

Sarah ThorsonMinneapolis Interagency Early Intervention

Committee5234 32nd Avenue, SouthMinneapolis, Minnesota 55417(612) 729-4755

Betsy TrombinoProgram Director, Pilot Parent Partnerships2150 East Highland, Suite 105Phoenix, Arizona 85016(602) 468-3001

Kathy TullosExecutive Director, Advocates for the

Exceptional580 East Main StreetPhiladelphia, Mississippi(601) 656-9345

Janet VohsEditor, Coalition QuarterlyNational Parent Resource CenterFederation for Children with Special Needs95 Berkeley StreetBoston, Massachusetts 02116(617) 482-2915

Anne Wallace, M.S.W.Addison County Counseling Services89 Main StreetMiddlebury, Vermont 05753(802) 388-6751

Peggy Weaver, M.S.W.Project CoordinatorFamily/Professional Collaboration ProjectDepartment of Social WorkUniversity of VermontBurlington, Vermont 05405-0160(802) 656-1156

Joan 0. Weiss, M.S.W.Director, Alliance of Genetic Support Groups35 Wisconsin Circle, Suite 440Chevy Chase, Maryland 20815(800) 336-GENE

Nora WellsFederation for Children with Special Needs95 Berkeley StreetBoston, Massachusetts 02116(617) 482-2915

Karen WitkinParent CoordinatorFamily/Professional Collaboration ProjectDepartment of Social WorkUniversity of VermontBurlington, Vermont 05405-0160(802) 656-1156

Josie WonDirector, Infant ProgramSultan Easter Seals School378 Mamaki StreetHonolulu, Hawaii 96821(808) 536-3764

MEDICAL EDUCATIONPROJECTS

Nancy DiVenereDavid Stiffer, M.D.The Medical Education ProjectParent to Parent of Vermont#69 Champlain MillOne Main StreetWinooski, Vermont 05404(802) 655-5290

Margo Peter, M.Ed.The Medical Home ProjectHawaii Medical Association1360 South BeretaniaHonolulu, Hawaii 96814(808) 536-7702

Stanley Handmaker, M.D., Ph.D.Christy Barden, R.N.New Mexico University Affiliated ProgramSchool of MedicineUniversity of New MexicoAlbuquerque, New Mexico 87131(505) 272-3000

William Schwab, M.D.Associate ProfessorPhysician Education Project on Developmental

DisabilitiesUniversity of WisconsinDepartment of Family Medicine and Practice777 South Mills StreetMadison, Wisconsin 53715(608) 263-7947

FaCrIllmily/Protistional Collaboration for n dren with Special Health Needs and Their Families 43

Family/Professional Collaboration:Suggested Readings and References

American Indian Parent Group. Listen Respect. Video tape produced by SouthwestCommunication Resources, Inc., P.O. Box 788, Bernalillo, New Mexico 87004.

Anderson, B. (1985). Parents of children with disabilities as collaborators in health care.Coalition Quarterly, 4, (2,3), 3-4, 15-18. Available from the Federation for Children with

Spec' .11 Needs, Boston, Massachusetts.

Anderson, P.P. & Fenichel, E.S. (1989): Serving culturally diverse families of infants andtoddlers with disabilities. National Center for Clinical Infant Programs, Washington, DC.

Barnard, K. (1985). Toward an era of family partnership. Equals in thispartnership: Parents of

disabled and at-risk infants and toddlers speak to professionals. Washington, D.C. NationalCenter for Clinical Infant Programs, 4.

Bishop, K.K. (in press). P.L. 99-457: A family-centered continuing education curriculum forsocial workers. Journal of Teaching in Social Work.

Cleveland, T. (1983). The family A critical factor in prevention. In W. Hall, G. St. Denis,& C. Young (Eds.), Proceedings. The family: A critical factor in prevention. Washington,DC: U.S. Department of Health and Human Services.

Cross, T. (1988, Summer). Services to Minority Populations: What does it mean to be aculturally competent professional. Focal Point, The Bulletin of the Research and TrainingCenter on Family Support and Children's Mental Health, Portland State University,Portland, Oregon, Volume 2, No. 4, 1-2.

Desguin, B.W. (1986). Chronic illness in children: An educational program for a primary..

care pediatric residency. American Journal of Diseases in Children, 140, 1246-1249.

Ell, K. & Northen, H. (1990). Families and health care: Psychosocial practice. New York:

Aldine de Gruyter, 159-160.

Family-centered care: Projects and products (January, 1992). An overview of relevant

programs and materials from special projects of regional and national significance. Availablefrom Pathfinder Resources, Inc., St. Paul, Minnesota.

Family-Centered Pediatric HIV Project. (1990). Children with HIV infection and theirfamilies: Guidance for funders, policy makers and service providers. Bethesda, Maryland:

Association for the Care of Children's Health, 4.

Featherstone, H. (1980). A difference in the family. New York: Basic Books.

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Family/Professional Collaboration for Children with Special Health Needs and Their Families 45

46

Freeman, J. (1992). The ties that bind. Life, Collector's Edition, New York, June 1, 19.

Gallegos, J.S. (1982). Planning and administering services for minority groups. In M. Austin,and W. Hershey (Eds.). Handbook of mental health administration: The middle manager'sperspective. San Francisco: Jossey Bass, 87-105.

Ghanian Adinto Ceremony, Adapted. Used by the African/American community in theBeethoven Project, Center for Successful Child Development, Chicago, Illinois.

Gleidman, J. & Roth, W. (1980). The unexpected minority: Handicapped children in America.New York: Harcourt Brace Jovanovich, 145.

Hassler, C. & DiVenere, N. (1991, Winter). Brilliant Disguises. Bulletin Zero to Three ParentNetwork, National Maternal and Child Health Resource Center, No. 2, 6-8.

Hobbs, N., Perrin, J. & Ireys, H. (1985). Chronically ill children and their families. SanFrancisco: Jossey-Bass, 317-318.

Hoyt, D., Ed. (1990). Toward a strategic partnership in family-centered care: A manual forparents and professionals participating in the CHSC parent consultant network. Iowa City,Iowa: Parent Partnership Project, 101.

Hulme, T.S.. Linder, J. & Kieler, J. (1990). Up with familiesa planning manual for familyweekends. Iowa City, Iowa: Child Health Specialty Clinics, 100.

Judge, G. (1985, February). Excerpts from Project Zero to Three Parents' Panel. The Signal.Washington, DC: National Center for Clinical Infant Programs, 1.

Mackta, J. (1992, April). Integrating consumers into the regional genetics networks. Areport available from the Alliance of Genetic Support Groups, Chevy Chase, Maryland.

May, J. (1990). Fathers of Children with Special Needs: New Horizons. Bethesda, Maryland:Association for the Care of Children's Health.

Meyer, D., & Vadasy, P. (in press). Sibshops: Implementing workshops for brothers and sisters ofchildren with special health and developmental needs. Baltimore: Paul H. Brookes.

Nathanson, M.N. (1986). Organizing and maintaining support groups for parents of childrenwith chronic illness and handicapping conditions. Washington, DC: Association for theCare of Children's Health.

New England SERVE (1989). Enhancing quality: Standards and indicators of quality care forchildren with special health care needs. Massachusetts Health Research Institute, Inc.,Boston, Massachusetts, 56.

Peters, S. (Winter, Spring, 1991). Changing images for people with disabilities. CoalitionQuarterly, Volume 8, Numbers I, 2, 6. Available from the Federation for Children withSpecial Needs, Boston, Massachusetts.

43Family/Professional Collaboration for Children with Special Health Needs and Their Families

Pinderhughes, E. (1989). Understanding race, ethnicity, & power; the key to efficacy inclinical practice. New York: The Free Press, 191-192.

Roberts, R.N., et al. (1990, September). Developing culturally competent programs forfamilies of children with special needs, 2nd Edition, Georgetown University ChildDevelopment Center, Washington, D.C.

Shelton, T.L., Jeppson, E.S. & Johnson, B.H. (September, 1987). Family-centered care forchildren with special health care needs, Association for the Care of Children's Health,Bethesda, Maryland.

Shonkoff, J. (1983). A perspective on pediatric training. In J.A. Mulick & S.M. Pueschel(Eds.), Parent-professional partnerships in developmental disability services.Cambridge, MA: Academic Guild.

SKIP of New York (1989). Vol 2: A guide to home-based health care for ventilator - assisted/tracheotomized children and children with severe respiratory compromise. New York:SKIP of New York, Inc., 200+.

Steele, B. (1989). Parent Resourcc Directory, 3rd ed. Bethesda, Maryland: Association forthe Care of Children's Health, 108.

Thorson, S.J. ( 1992, Summer). Excerpts. Best Foot Forward, a Newsletter of the SpecialNeeds Babies Project, Volume 2, Number 1.

Vincent, L.J. (1985). Family relationships. Equals in this partnership: parents of disabledand at-risk infants and toddlers speak to professionals. Washington, D.C.: National Center forClinical Infant Programs, 33-41.

Vosler-Hunter, R. & Hanson, S. (1991, Fall). Parents as policy makers: Challenges forcollaboration. Focal Point, The Bulletin of the Research and Training Center on FamilySupport and Children's Mental Health, Portland State University, Portland, Oregon,Volume 6, No. 1.

Weiss, J.0., Karkalits, J.E., Bishop, K.K. & Paul, N.W., Eds., (1986). Genetic support,groups:Volunteers and professionals as partners. March of Dimes Birth Defects Foundation:Original Article Series, Volume 22, No. 2.

Wells, N., & Anderson B., (1986). Preparing children for medical testsGuidelines for parentsand professionals. Boston: CAPP: National Parent Resource Center, Revised, 8.

Yamane, E. (1986, November). Parents are equal partners. Proceedings from a workshop,Hawaii Department of Health, Honolulu, 1.

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Family /Professional Collaboration for aildrrn with Special Health Needs and Their Families 47

Key Elements of Family-Centered Care

48

I. Recognizing that the family is the constant in the child's life, while the service systemsand personnel within those systems fluctuates.

2. Facilitating parent/professional collaboration at all levels of health care: care of anindividual child; program development, implementation, and evaluation: and policyformation.

3. Honoring the racial, ethnic, cultural, and socioeconomic diversity of families.

4. Recognizing family strengths and individuality and respecting different methods ofcoping.

5. Sharing with parents, on a continuing basis and in a supportive manner, complete andunbiased information.

6. Encouraging and facilitating family-to-family support and networking.

7. Understanding and incorporating the developmental needs of infants, children, andadolescents and their families into health care systems.

8. Implementing comprehensive policies and programs that provide emotional andfinancial support to meet the needs of families.

9. Designing accessible health care systems that are flexible, culturally competent, andresponsive to family-identified needs.

Source: National Center for Family-Centered Care. (1990). What is family-centered care?(brochure). Bethesda, MD: Association for the Care of Children's Health.

For more information and resources about family-centered care policies, programs and practices,contact the Association for the Care of Children's Health (301-654-6549), 7910 WoodmontAve., Suite 300, Bethesda, MD 20814.

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Family /Professional Collaboration for Children with Special Health Needs and Their Families