ED 288 321

AUTHORTITLE

INSTITUTION

SPONS AGENCY

REPORT NOPUB DATEGRANTNOTEAVAILABLE FROM

PUB TYPE

DOCUMENT RESUME

IC 200 799

Shelton, Terri L.; And OthersFamily-Centered Care for Children with Special HealthCare Needs.Association for the Care of Children's Health,Washington, DC.Health Resources and Services Administration(DHHS/PHS), Rockville, MD. Office for Maternal andChild Health Services.ISBN-0-937821-48-987MCJ-113793-02-079p.; Photographs will not reproduce well.Association for the Care of Children's Health, 3615Wisconsin Ave., N.W., Washington, DC 20016 ($5.00; 10for $45.00).Guides - Non-Classroom Use (055) -- InformationAnalyses (070) -- Reports - Descriptive (141)

EDRS PRICE MFO1 Plus Postage. PC Not Available from EDRS.DESCRIPTORS Check Lists; *Community Health Services; Cooperation;

Coping; *Delivery Systems;, *Diseases; *FamilyInvolvement; Family Role; Health Personnel; *HealthPrograms; Outreach Programs; Parent Education; ParentParticipation; *Special Health Problems

IDENTIFIERS *Child Health Care

ABSTRACTThe book defines and discusses eight key elements of

a family-centered approach to care for children with chronicillnesses and special health care needs: (1) recognition that thefamily is the constant in the child's life, while the service systemsand personnel within those systems fluctuate; (2) facilitation ofparent/profeusional collaboration at all levels of health care; (3)sharing of unbiased and complete information with parents about theirchild's care on an ongoing basis in an appropriate and supportivemanner; (4) implementation of appropriate policies and programs thatare comprehensive and provide emotional and financial support to meetthe needs of families; (5) recognition of family strengths andindividuality and respect for different methods of coping; (6)understanding and incorporating the developmental needs of infants,children, and adolescents and their families into health caredelivery systems; (7) encouragement and facilitation ofparent-to-parent support; (8) assurk.nce that the design of healthcare delivery systems is flexible, accessible:, and responsive tofamily needs. The document also offers the following: (1) a briefreview of selected research studies; (2) a series of checklists forprofessionals and parents, states, communities, professional trainingprograms, hospitals, and research investigations; (3) lists ofselected technical organizations, audiovisual and written materials,and family-centered programs; and (4) a list of over 70 references.(JW)

11.s. OCRINTMIIIIT CP INICATIOSarno a mow* Rased end ImetoveenentEDUCATIONAL

C (ERIC)RESOURCES INFORMATIONENTER

0 This document has been reproduced ailremoved horn the person or ottOntudionwomen° it

0 Meta changes neve been mode to onerousmproduction quay

MMus of mew et °onions stated In this dab,ment do not neceeeenly tepteeent aideOEM position or policy

"PERMISSION TO REPRODUCE THISMATERIAL IN MICROFICHE ONLYHAS BEEN GRANTED BY

-.I # ' -

TO THE EDUCATIONAL RESOURCESINFORMATION CENTER (ERIC)."

Shoo

The Division of Maternal and Child Health of the U.S. Public Health Servicehas provided support for the development of this publication through grant#MCJ 113793-02-0. DMCH has funded this book as part of a project of theAssociation for the Care of Children's Health. The overall purpose of thisproject is to develop a nationwide program to enhance the implementationof a family-centered approach to care for infants, children, and adolescentswith special health care needs. ACCH has publications and media and canprovide consultation services to assist in developing family-centered carepolicies and programs. For further information, contact:

Association for the Care of Children's Health3615 Wisconsin Avenue, N.W.Washington, DC 20016(202) 244-1801

Division of Maternal and Child HealthU.S. Public Health Service5600 Fishers LaneRockville, Maryland 20857(301) 443-2370

3

FAMILY-CENTERED CAREFOR CHILDREN WITH SPECIALHEALTH CARE NEEDS

byTerri L. Shelton, Ph.D.Elizabeth S. Jeppson, Ph.D.Beverley H. Johnson

ASSOCIATION FOR THE CARE OFCHILDREN'S HEALTH3615 Wisconsin Ave., N.W.Washington, D.C. 20016(202) 244-1801

ISBN 0-937821-48-91987 Association for the Care of Chtldren's Health

4

CONTENTS Family-Centered Care for Children withSpecial Health Care Needs: An Overview 1

Elements of Family-Centered Care1. Recognition That the Family Is the Constant in the

Child's Life While the Service Systems and PersonnelWithin Those Systems Fluctuate 3

2. Facilitation of Parent/Professional Collaboration at AllLevels of Health Care . 6

3. Sharing of Unbiased and Complete Information withParents About Their Child's Care on an Ongoing Basisin an Appropriate and Supportive Manner 14

4. Implementation of Appropriate Policies and Programs thatAre Comprehensive and Provide Emotioni , and FinancialSupport to Meet the Needs of Families 20

5. Recognition of Family Strengths and Individuality andRespect for Different Methods of Coping 26

6. Understanding and Incorporating the Developmental Needsof Infants, Children, and Adolescents and Their Familiesinto Health Care Delivery Systems 31

7. Encouragement and Facilitation of Parent-to-ParentSupport 36

8. Assurance that the Design of Health Care DeliverySystems Is Flexible, Accessible, and Responsive toFamily Needs 44

Research 49

Implementing Family-Centered Care 54A Checklist for Parent/Professional Collaboration 55A Checklist for States 56A Checklist for Communities 57A Checklist for Professional Training Programs 59A Checklist for Hospitals 60A Checklist for Research Investigations 62

Family-Centered Care Resources 63Technical Assistance 64Audiovisual and Written Materials 64Programs 67

Summary of Elements of Family-Centered Care 71

References 72

ONE

Family-Centered Care for Childrenwith Special Health Care Needs: An Overview

During the last thirty years, systems of carefor children with chronic illnesses and dis-abling conditions have evolved that have notrecognized adequately the support needs offamilies whose children have special healthcare needs or the essential roles that parentsplay in the lives of their children. There is,however, a growing recognition on the part ofprofessionals that the approach to healthcare for these children and their familiesmust be changedthat health care must befamily-centered.

"Not only is the family the primaryunit for the delivery of health services toinfants and children, but the familyenvironment is probably the greatestinfluence on a child's health . . . a childis dependent upon his or her mother andother family members not only for thephysical necessities of life . . . but alsofor the emotional support and intellec-tual stimulation needed for healthygrowth and development. . . . Our grow-ing recognition of the psychological andsocial components of health hasenhanced our awareness of the family'simportance. . . . The family is not onlythe principal influence upon a child'sdevelopment, it is also the intermediarybetween the child and the outside world,including the health care system. . . .

Health providers can support, encourage,and enhance the competence of parentsin their role as caregivers . . ." (Schorr,Chair of the Select Panel for the Promo-tion of Child Health, 1980).

Although we believe that all children whoencounter the health care system wouldbenefit from a family-centered approach tocare, it can be especially beneficial to theseven to ten million children in the U. S. whohave special health needs (keys, 1981).

But what is family-centered care? Can weagree, a., parents and professionals, on acommon definition of the term? Can wedetermine what attitudes, policies and practi-ces support a family-centered approach? It isas a response to these and other questionsabout family-centered care that this publica-tion was developed.

While it is impossible to define all theways in which care can become family-centered, this publication presents eight

components that have been identified byparents and professionals across the countryas key elements of a family-centeredapproach to care. Each element is defined,and specific examples of family-centeredapproaches are presented. Statements of par-ents whose children have chronic illnessesor disabling conditions and profes$ionalswho work with them help to clarify in per-sonal terms what family-centered care is andwhat it is not. A consideration of each com-ponent individually reinforces the multifa-ceted nature of this approach and can behelpful to individuals who are developing,implementing, or monitoring programs andpolicies for children and families. To furtherfacilitate the implementation of family-centered care, concrete examples of pro-grams and policies are presented. Theseexamples are by no means exhaustive. They,and the checklists, and other resources listedin the appendix can be used by parents andprofessionals to generate ideas for initiatingor enhancing family-centered approaches tocare.

While it is important to discuss the indi-vidual components of family-centered care, itis equally important to consider all the ele-ment. as a whole. Family-centered care isnot just one component. Each element rein-forces and facilitates the implementation ofthe others. Together the elements convey anew philosophy of caremoving from aninstitution/agency oriented approach, to achild-centered approach, and most recentlyto a family-centered approach. We areapproaching what Tumbull and Summers(1985) have called a "Copernican Revolu-tion" in the care of children with specialneeds.

"Copernicus came along and made astartling reversalhe put the sun in thecenter of the universe rather than theEarth. His declaration caused profoundshock. The earth was not the epitome ofcreation; it was a planet like all otherplanets. The successful challenge to theentire system of ancient authorityrequired a complete change in philoso-phical conception of the universe. This isrightly termed the 'CopemicanRevolution.'

Let's pause to consider what wouldhappen if we had a Copernican Revolu-

6 1

tion in the field of disability. Visualizethe concept: the family is the center ofthe universe and the service delivery sys-tem is one of the many planets revolv,ngaround it. Now visualize the servicedelivery system at the center and thefamily in orbit around it. Do you see thedifference? Do you recognize the revolu-tionary change in perspective? We wouldmove from an emphasis on parentinvolve.aent (i.e., parents participating inthe program) to family support (i.e., pro-grams providing a range of support ser-vices to families). This is not a semantic

2

exercisesuch a revolution leads us to anew set of assumptions and a new vistaof options for service" (Turnbull &Summers, 1985, p. 12).

As with otve "revolutions," this onedemands a great deal of the participants.Neither parents nor professionals are fullyprepared for the new roles they must play indeveloping programs that are truly family-centered. It is hoped that this publicationalong with thoughtful discussion and a posi-tive commitment to change can make family-centered care a reality.

/ Recognition that the Family1 Is the Constant in the Child's Life

While the Service Systems and PersonnelWithin Those Systems Fluctuate

3

INTRODUCTION This is the most crucial 1 omponent offamily-centered care. It is essential for healthcare professionals to recognize, respect, and

WHAT DOESIT MEAN?

4

Because the ultimate responsibility formanaging a child's health, developmental,social, and emotional needs lies with thefamily, health care systems must enable fam-ilies to function as primary decision makers,caregivers, teachers, and advocates for theirchildren.

"It is the parents of a child who arethe link among the specialists and theonly people who see the child in all set-tings over time. Therefore, parents mustbe prepared to assume the role of pro-viding the overall management to coor-dinate the efforts of those many special-ists and the needs of the child within thecontext of the family" (Anderson, 1985,pp. 3-4).

As one mother of a child with specialhealth care needs emphasized, "I'm not justa member of the team, I'm the captain of theteam." While not all parents may wish theirrole to be one of "captain," they all have avitally important role to play. An apprecia-tion of the importance of the family's role,the unique contribution they make, or theconstant responsibility they assume in thecare of their children may not always bereflected in professionals' attitudes, policiesor practices.

"Many professionals realize full wellthat parents are the ones who imple-ment the therapy the professionals teachthem. Yet others, observing the progressof a disabled child may still say, 'Earlyintervention is doing a wonderful job.'(Cetroni, 1985, p. 2).

Not only do families have the responsibil-ity for the daily implementation of theirchild's therapeutic program, they do this inaddition to addressing their child's otherdaily needs. This means balancing profes-sional recommendations with their ownpriorities for their child. While the physicaltherapist may feel that range of motion exer-cises and an appointment with an ortho-pedic surgeon are of vital importance, andthe speech/language pathologist asserts thattime must be spent in working on totalcommunication skills, the parents may beprimarily concerned with daily, ongoing

9

support the pivotal role that families play inthe care of their children.

activities such as "When will my child beable to feed himself?", "When ;an I starttoilet training?", or "How can I help him getalong better with his older brother?" A studyby Goldstein, Strickland, Turnbull, and Curry(1980) indicated that the topic most fre-quently addressed by parents in Individual-ized Education Plan (IEP) conferences waspersonal family life, not goals, objectives,evaluation levels, or placement.

Professionals and families must worktogether to balance professional recommen-dations with the priorities of families so thatprograms truly meet family needs and goals.Without this balance, prograr.:-. may bedeveloped that place unrealistic expecta-tions and demands on parents; home careplans can become unmanageable ak'd, there-fore, are not implemented; and then familiesmay experience enormous feelings of guiltand frustration.

'Although I tried to sound reason-able . . . this new demand appalledme. . . . Jody, I thought is blind, cerebralpalsied, and retarded. We do his physi-cal therapy daily and work with him onsounds and communication. We feedhim each meal on our laps, bottle him,change him, bathe him, dry him, put himin a body cast to sleep, launder his bedlinens daily, and go through a variety ofroutines designed to minimize his mis-eries and enhance his joys and hisdevelopment. . . . Now you tell me that Ishould spend fifteen minutes every dayon something . . . directed at the healthof his gums. . . . Where is the fifteenminutes going to come from? What am Isupposed to give up? Taking the kids tothe park? Reading a bedtime story to myeldest? Washing the breakfast dishes?Sorting the laundry? Grading students'papers? Sleeping? Because there is notime in my life that is not spoken for"(Featherstone, 1980, pp. 77-80).

Recognizing that parents play a centralrole in their child's life also involves valuingtheir judgement and respecting the uniquecontributions that tney make. Because par-ents are the only ones who see their child inall settings, they really are the "experts," and

their observations and recommendationsmust be taken seriously if the health careplan is to be family-centered.

Recognizing and supporting the family'srole also means evaluating whether pro-grams and policies address the long -termneeds of the total family rather than just theimmediate needs of the child. For example,the medical needs of a young child on a ven-tilator may be adequately addressed in ahospital setting, but is this an appropriatelong-term solutic --1 for the child and family?If not, if home care is a better option, arethere mechanisms to provide the respitecare and other supports that are necessaryfor the child to live at home?

MAKING ITA REALITY

Once we begin to understand and recog-nize the parents' role, how can this elementbe reflected in health care programs andpolicies? What should be our philosophy ofcare?

"The philosophy we believe shouldbe operative in planning and deliveringour services can be su imarized in thefollowing statements. Parents and fami-lies are the durable thread in the life of ahandicapped child. Public agencies andprivate agencies are transitory, droppingin and out based upon the condition,the complication, or the chronologicalage of the child. If this previous state-ment is true then it is necessary for us tostructure our activities in such a way totake this reality into account and tomake provisions for parents as activeparticipants in planning and in policydevelopment" (Freedman, 1986).

The following program is an example ofhow services can be provided in a way thatrecognizes the pivotal roles of parents intheir children's lives.

ProgramFamily-Centered Planning Program

The Family-Centered Planning ?rogram atthe Kennedy Institute for HandicappedChildren, Baltimore, Maryland is a home-and community-based program for fami-lies of children with developmental dis-abilities between birth and 21. ThePlanning Coordinator and family worktogether to establish a community inter-disciplinary team that plans child and

t 0

The Family Is the Constant

Professionals may also need to be certainthey are actually supporting and not sup-planting the family's role. A family-centeredapproach involves supporting families with-out undermining their confidence in theirability to care for their children.

"Often times because they [parents]have relied on the professional to 'maketheir child better' they feel they nolonger can add anything to the child'slife. Help them to realize that this isn'tso, that they make the 'educated'decisionsthat the child is their childthis will only help to strengthen themthrough the years to come" (Beckett,1985, p. 11).

family support services. Family decisionsare the primary consideration in how ser-vices are planned and provided. Theseplans are based on the strengths as wellas the needs of the family. Parents areencouraged to take a leadership role inthis interdisciplinary team process.Though professional recommendationsare critical to the service plan, the parentsgreatly influence how, when, and wherethese services are provided. This programincludes several features which ensurethat the strengths and individuality ofchildren and families are respected andsupported.

Visits are made in the family home orpreferred location at a time convenientto them.

Staff complete a needs assessmentbased on the parents' concerns,desires, and needs.

Parents are the key to the developmentof the annual service plan. Theydetermine who will attend, wh 2re, andwhen it will be held, and what rolethey want to assume, (i.e., chair oractive participant).

The service plan is comprehensive andaddresses all areas of need (i.e., ser-vices to the child, family supports,financial assistance, recreation, andemotional needs).

When requested, staff are available toassist the family in enhancing theirindividual skills as their child's advo-cate and coordinator.

5

2 2Facilitation of Parent/ProfessionalCollaboration at All Levels of Health Care

e

611

INTRODUCTION

WHAT DOEIT MEAN?

If "recognition of the family as the con-stant in their child's life" is at the heart of afamily-centered approach, then "parent/pro-fessional collaboration" is the spirit offamily-centered care. Parent/professionalcollaboration and an appreciation of theparents' role has been evolving in healthcare and in policies and educational pro-grams since the 1960's. It has been furtheredby the enactment and implementation of P.L.94-142, the law that addresses the educa-tional needs of children with disabling con-ditions. This law explicitly states that parentshave a right to basic information about their

SFor many years, health professionals have

functioned in an environment in which theyprovided care, made the decisions, and con-trolled the flow of information to families.Professionals, not parents, were in control.As one professional notes,

"For a number of years, the atti-tudes of professionals working withfamilies have seemed to say, 'Tell uswhat your problem is, and we'll fixit The professionals were in asense in control. We professionalsneed to change our orientation. Weneed to reframe that question to asksimply 'How can we help you?' Weneed to begin to view our work withfamilies as a partnership in whichwe are the consultants but the fami-lies are in charge, and it is on thecare of their child that we are in factconsulting them" (Barnard, 1985,p. 4).

The change in orientation must bereilz.cted at all levels of health care: in pro-viding care for an individual child; in devel-oping community and hospital services; andin the charting of policy. Meaningfulparent/professional collaboration at all lev-els is the driving force to ensure qualityhealth care for children and their families.

Collaboration in Providing Care forthe Individual Child

Parent/professional collaboration is vitallyimportant in planning and providing servicesfor an individual child. "Parents can andshould be a part of the ... health care-giving

12

Parent/Professional Collaboration

children and "that they can participatemeaningfully in planning and decision-making" (Anderson, 1985, p. 3). This level ofparent participation requires that profes-sionals think carefully about their relation-ships with parents. As one participant at arecent national meeting expressed, "If weare going to be successful with families ...we are going to need to reorient as profes-sionals.. .. We are going to need to askthem to join us cooperatively as equals inthis partnership so that we create a realityout there that matches what all of us want tosee" (Vincent, 1985, p. 40).

team, not bystanders" (Kaufman, 1985, p. 3).Though different, the perspectives of bothparents and professionals are needed. Whileprofessionals can offer the expertise of theirdiscipline and knowledge gained from work-ing with a number of children, parents arethe only ones who can contribute informa-tion on their particular child in all settings.Parent/professional collaboration can leadto more comprehensive and appropriatecare plans that are individually tailored toboth the child's and family's strengths andneeds.

Despite the benefits of collaboration atthis level, "parental involvement" may bemore rhetoric than actual practice. There arestill too many incidents where parents' opin-ions and expertise have not been consideredin their child's care .. . or were includedonly after great persistence on the part of theparent.

"By the end of the day, Zack hadimproved and wanted to runaround. When the respiratory thera-pist came around, I suggested it wastime to disconnect the 02-0O2moni-tor so that Zack would be free tomove. He agreed. To get the ordertook much discussion, explanation,and arguing. The resident on dutywas resistant. He finally admittedknowing absolutely nothing aboutZack's condition other than what hesaw in the chart, threw up his handsand said let's write an order 'PerMom'! . . . One small step for man,but a giant leap for parents."(Kaufman, 1985, p. 8).

7

Not all professionals are this resistant toparent input. And yet, there can be manyreasons why both parents and professionalshave difficulty working effectively with eachother on the care of an individual child. Formany, the problem may be a lack of expe-rience in working in a collaborative way.Whatever the barriers, when parents and pro-fessionals are able to combine their exper-tise, the benefits for the child far outweighthe initial difficulties.

Collaboration in DevelopingCommunity and Hospital Services

At this level of collaboration, numbers ofchildren with special needs benefit from theability of parents and professionals to worktogether to develop, implement, and evaluateprograms. The importance of this type of col-laboration is evident in other fields. Majormanufacturers spend millions of dollarssoliciting consumer input to ensure thattheir products are designed and packaged ina way that reflects the desires and needs ofthe public. Parents of children with chronicillnesses or disabling conditions are consum-ers as wellconsumers of vital services fortheir children. This type of "consumer partici-pation is a vital process and is an importantcomponent in quality health care" (Ander-son, 1985, p. 18). A family-centeredapproach to care encourages parents toexercise their rights as consumers.

Family-centered care also involves creat-ing opportunities that allow both profession-als and parents to contribute their knowl-edge and experience in the development ofservices. Because of their "hands on" expe-rience, parents can offer a valuable perspec-tive on the range of services that are neededand how to make them more accessible andsupportive for families. Because their per-spective is different from those operatingwithin an agency, parents often bring fresh,innovative, and creative solutions to long-

What is needed in order to make parent/professional collaboration a reality at alllevels of care?

Collaborative SkillsOne thing that is necessary is the skill to

work collaboratively with another person .. .whether that person is a professional or a

13

standing service delivery problems. Multidis-ciplinary, parent/professional advisorycommittees in hospitals, in communityagencies, and it state health departmentsexemplify the type of cooperative endeavorthat can lead to n ore responsiveprogramming

Collaboration at the Policy LevelFamily-centered care can also be achieved

through parent/professional collaboration atthe policy level. Policies that are developedthrough the joint efforts of parents and pro-fessionals have benefits for all involved.

For families, "being regarded as capableof participating is an important message.. ..Typically, families or individuals begin withlittle knowledge of the health care system orsense of their own competerv:e. This is anarea where growth is particularly important"(Anderson, 1985, p. 17). Being involved inthe decisions also affords a much neededoverall sense of the health care system.

For children, the result of parent/profes-sional collaboration at the policy level notonly results in more comprehensive and bet-ter coordinated services, but more impor-tantly, "parents [also] serve as important rolemodels for their own children. By takingactive roles as partners with health and otherprofessionals, parents help prepare childrenfor their own roles later in life" (Anderson,1985, p. 17).

For professior,als, parent/professional col-laboration at the policy level can lead to a"greater understanding of the issues . .. andlead to better questions and better answers."It provides a forum ft., "feedback from indi-viduals with disabilities and chronicillnesses and their families" and can"improve services . .. and serve as importantreinforcement to professionals for the jobsthey do" (Anderson, 1985, p. 17).

parent. Just as parents have been thrust intonew roles without adequate emotional oreducational support, so, too, have profes-sionals been ill prepared for this new colla-borative relationship with parents.

"Health care providers have inthe past been granted uncontestedcontrol over children as critically ill

as these children. The survival ofthese children long enough for fam-ily adaptation to occur is a recentphenomenon. . . . The prolongedintensive interaction between healthcare providers and family members. . . is relatively new. Health careproviders have not previously hadan opportunity to experience familycompetency in the care of medicallyfragile children" (Thomas, 1986a).

Further, professionals have not learnedhow to develop working relationships withother disciplines or with community supportagencies. As recently as twenty years ago,pediatric residents were taught how toarrange for the institutionalization of new-born infants with own Syndrome, not howto encourage care for the child at home orhow to identify available community supportservices for the child and family. Educationalprograms have not taught health profession-als how to encourage families in their natu-ral caregiving roles. And thus many profes-sionals may inadvertently foster dependencein families rather than encouraging inue-pendence and confidence.

New approaches to preservice training forprofessionals are needed. This fact was rec-ognized almost ten years ago by the TaskForce on Pediatric Education. In 1978 theTask Force concluded that greater attentionmust be directed to the family and psycho-social aspects of health care for childrenincluding those with chronic illnesses anddisabling conditions (Task Force, 1978).

"Borrowing one of the fundamental princi-ples of developmental disability services,appropriate experiences [for health care pro-fessionals] in the beginning years could beviewed as 'early intervention' for this 'highrisk' group of professionals" (Shonkoff,1983, p. 80).

The need for additional training in thisarea is true for all professions, not just pedi-atrics, and for parents as well. Training cur-ricula developed by parents and profession-als from all disciplines will greatly enhancethe collaborative relationships that can leadto quality care.

Opportunities for Interaction

Collaborative skills alone will not be suc-cessful without opportunities to use them.There must be formal and informal mecha-nisms that increase the opportunities forparents and professionals to work together.In the care of the individual child, this couldmean involving the parent directly at eachstage of the child's care. Or it may mean thatan agency schedules fewer patients during a

14

Parent/Professional Collaboration

clinic in order to allow professionals time todiscuss more fully with the parents theirpriorities for their child.

In developing community and/or hospitalservices, advisory committees are onemechanism where professionals can elicitfeedback from parents as to the range of ser-vices that are needed. Other factors mustalso be considered if these opportunities areto be a reality. Reimbursement for parents'time, their transportation ar.i child carecosts, and scheduling meetings at a timethat is convenient for parents will greatlyfacilitate the success of collaboration at thislevel.

Opportunities for parent/professionalinteraction are even more important at thepolicy level where they may be less likely tooccur without some planning. Governor'stask forces, state health department advisorycommittees, and working conferences, witheach composed of equal numbers of parentsand professionals, are just a few of the waysopportunities can be created. As with col-laboration at the community or agency pro-gram level, collaboration at the policy andstate level must be ensured by consideringthose factors that enable parents to partici-pate. Parents must be reimbursed for theirparticipationwhether it is for travel, forconsultation or for full time employment. AsGene Judge, a parent from Maine noted,

"True involvement of parents atthe state level will come when aparent is paid full timethat's notgoing to happen soon, but it shouldbe possible to subsidize parents'participation. Reimbursement forchild care expenses, time off givento a parent by an employer wouldallow effective parents to participatein state initiatives" (Judge, 1985,P. 1).

An Examination of AttitudesPerhaps the most important factor in mak-

ing this aspect of family-centered care a real-ity is that parents and professionals come tothe relationship with attitudes which areopen to a collaborative approach. First theremust be an awareness of each other's per-spective. While it is certainly understandablethat both parents and professionals maycome to this relationship with some degreeof cautiousness and even anger, it is impor-tant for all to try to interact in nonadversarialways.

". . . before a partnership cangenuinely exist, there must be give-and-take, mutual respect, and some-

9

thing like moral and cultural equal-ity. Both the parent and theprofessional must attempt to under-stand the other's point of view . . ."(Gleidman & Roth, 1980, p. 145).

There also must be balance. Given thatthere need to be more instances of parentsand professionals working together in a col-laborative fashion, it is easy to insist on fullparticipation of every parent at every step.However, care must be taken that in themove to become more family-centered thependulum does r of swing the other way.Parent/professi( nal collaboration must_ notbecome "one more thing" for parents to doas they care for their children. Parent/pro-fessional collaboration is a continuum. Theaim in family-centered care is a balance. It isachieved by giving the family the option ofbeing anywhere along that continuum . . .

depending upon the strengths and needs ofthe child, the family, and the professionalsthat are involved.

Finally, for parent/professional collabora-tion to truly succeed, professionals must becommitted to this approach. They must becareful that the appointment of a "token par-ent" to an ineffectual advisory committeedoes not become the way to satisfy a family-centered "conscience" or that parent partic-ipation is used as a solution to staff short-ages or to avoid taking responsibility fordifficult decisions. Collaboration is crucialbecause it leads to better care for childrenwith special health needs.

The following are examples of parent/pro-fessional collaboration at all three levels ofhealth care.

In Planning for the Individual Child

Project Dakota

This is an early intervention program serv-ing children with special needs from birthto four in Dakota County, Minnesota. Thename "Dakota" means "alliance" in thenation of the Sioux, and this programemploys a transdisciplinary service deliv-ery model in which parents and profes-sionals form an alliance to assist the fam-ily and community in promoting theoptimal development of the child. AsLinda Kjerland, the project's director hasnoted,

"We've thrown away the wordsparent involvement' and instead intheir place put in 'what is theappropriate staff involvement withfamilies.' We recognized that we arean extension of a family system andthey are not an extension of us . . .

10

that they exist and will exist longafter our services to them will cease,and we need to be supportive oftheir efforts through our efforts"(Kjerland, 1986).

The design, implementation, and eval-uation of the child's program are theresult of a coll. :,rative effort of theparents and the service providers.The pivotal role of the parents isclearly evident in the project's goals:

focus on the child's and family'sneeds that are considered essen-tial by parents,

provide parents with direct andmeaningful participation through-out the intervention process,

promote the acquisition of knowl-edge, skills, and confidence byparents to describe their child'sstrengths and needs and to identifyand carry out goals for their child,

encourage the transmission ofthese strategies by parents to othercaregivers and settings, and

increase the child's ability to func-tion in the least restrictiveenvironment.

The family-centered approach is par-ticularly evident in the assessmentcomponent of the program. The par-ent is an active participant in theassessment, facilitating the child'sresponses and in some cases, admin-istering the test items. Because alldisciplines are present during theevaluation, the child does not have toexperience the usual grueling day ofmultiple assessments. It also elimi-nates the necessity of parents havingto answer the same questions frommultiple professionals. The parentsare present for the discussion of theresults. The focus of the evaluation isto identify not only the child's needsbut their strengths as well, and thediscussions and recommendationsare focused on the parents' priorities.For more information contact LindaKjerland, Project Director, Dakota,Inc., 680 O'Neill Drive, Eagan, MN55121, (612) 455-2335.

In Developing Community andHospital Services

PaLent Advisory CommitteeChildren'sMedical Program, Jackson, Mississippi

Established in 1986, this committee pro-vides recommendations to the general

1 tr

Advisory Board of the Children's MedicalProgram (formerly Crippled Children'sServices). The goal of the committee isthreefold:

I) to educate the Board as to the needsof children with chronic illness anddisabilities in order for CMP todevelop programs and policies thatare responsive to their needs;

2) to increase public awareness of thebenefits of the services provided byCMP; and,

3) to advocate for state legislation that issupportive of these programs.

Children's Case Resolution SystemSouth Carolina

This commission was created by theSouth Carolina Children's CoordinatingCabinet to review cases of children notbeing.served adequately, collect data, andidentify gaps in delivery of services. Mostof the commission's members are parentsof children with special needs.

II Community Advisory BoardChildren'sHospital Child Health Centre of Alberta,Canada

Begun in 1973 the Community AdvisoryBoard represents parents and communityassociations. Its purpose is to providedirection and to give advice on an ongo-ing basis to the Board of Trustees and toensure that the concerns of parents aresolicited and channeled directly to theboard.

Parent Advisory CommitteeChildren'sHospital, Boston, Massachusetts

This committee was formed to assist theplmizing team on construction of the newhospital facility and to provide the per-spective of children and families. Thecommittee has grown beyond its originalrole on the planning team and continuesto serve an advisory capacity in thedevelopment of hospital policies.

Parent Advisory Committee Survey

In the spring of 1987, the Federation forChildren with Special Needs completed asurvey examining parent/consumer par-ticipation in advisory committees withinthe state departments of Maternal andChild Health (MCH) and Children withSpecial Health Needs (formerly CrippledChildren's ServicesCCS). Consumerparticipation exists in 34 states with 20states having more than one committeewith parent representation.

16

Parent/Professional Collaboration

In this survey, the state Directors werealso asked to comment on the perceiveddifficulties and benefits of this form ofparent/professional collaboration. Thedifficulties largely related to factors affect-ing parents' ability to attend the meetingssuch as needed reimbursemen. for traveland child care expenses. The other majordifficulty was that professional terminol-ogy and parents' lack of information oftenbecame a barrier to communication andunderstanding.

The benefits were many. The most fre-quent comment was that the participationof parents on the committees provided abroader understanding of parents' needs,and they were able to provide alternativesolutions to service delivery problems.One director noted,

"Operational policies ere exam-ined in light of parents' and family'sneeds, not agency convenience andlegislative action. It helps to remindprofessional staff and agencies thatthey really serve people and not'clients.'

For information on this survey or a similarsurvey examining consumer participationon committees in children's hospitals andhospitals with pediatric residency pro-grams, contact Betsy Anderson, Federa-tion for Children with Special Needs, 312Stuart Street, Boston, MA 02116 (617)482-2915.

At the Policy Level

Arizona Consortium for Children

The Consortium consists of parents, pro-fessionals, organizations, hospitals, andstate agencies concerned with improvingthe quality of care for children with spe-cial needs through a collaborative pro-cess. Because of its multifaceted nature,the Consortium is seen as an importantresource. For example, when the state'sChildren's Rehabilitative Services wasinterested in developing grant guidelinesfor the delivery of new services, the Con-sortium was consulted. As a result of theiridentifying a need for increased psycho-social services and greater coordinationof care, four full time positions werecreated, two psychologists and two spe-cial educators, to ensure the coordinationand continuity of care as the children gofrom home to hospital to community.

The Consortium has been particularlyeffective in the legislative process. In1986, two pieces of legislation were

12

passed supporting children with specialneeds and their families. One requiredschool districts to develop a homeworkpolicy for children with chronic illnesses.This policy enables these children tokeep up with school work and to remainin a regular classroom placement despitefrequent absences. The second pieceestablished a statewide information andreferral system for children with chronicillnesses which can be accessed througha toll free number. For more informationcontact Barbara Hopkins, P.O. Box 2128,Phoenix, AZ 85001 (602) 838-9006.

In Education and Training ProgramsEducation and training programs are also

needed in order to provide both parents andprofessionals with the skills necessary toenter into a collaborative partnership. Thefollowing are organizations and programswhich address this need:

Federation for Children with SpecialNeedsBoston, Massachusetts

The Federation has received funds fromthe U.S. Department of Health and HumanServices, Division of Maternal and ChildHealth for the project entitled CAPPCollaboration Among Parents and(Health) Professionals. Thr overall pur-pose of the project is to increase andencourage parent involvement in thehealth care of their children who havedisabling conditions or chronic illnesses.The goals of the CAPP Project include:

the preparation of parents to assumean integral role in the health care oftheir children,

the promotion of communication andcollaboration among parents andhealth care providers, and

the development of a national systemto ensure parents access to informa-tion and peer support.

The activities of this project include thedevelopment of written materials, trainingpackages, workshops, and presentations.Models of collaboration with other parentand professional agencies and groupswill be designed, field tested, and repli-cated. For more information, contact BetsyAnderson, CAPP, Federation for Childrenwith Special Needs, 312 Stuart Street, 2ndFloor, Boston, MA 02116 (617) 482-2915.

17

The Association for the Care of Children'sHealth (ACCH)Washington, D.C.

ACCH has a three year grant from the Di-vision of Maternal and Child Health whichbegan lanuary 1, 1986. The overall goal ofthe project is to promote parent/profes-sional collaboration and a family-centered approach to care for childrenwith spf!cial health care needs. A keycomponent to the implementation of thisgrant is ACCH's parent network. Thisgrowing network consists of approxi-mately 400 parents of children with spe-cial needs across the country who areleaders in their own communities andstates. This network provides ongoinginput in the development of publicationsand media, in providing consultations,and in the general activities of ACCH. TheParent Network Meeting, which has beenheld concurrently with ACCH's AnnualConference over the past five years, pro-vides another invaluable opportunity forthe exchange of information and re-sources among parents and between par-ents and professionals. For more informa-tion on ACCH's activities, contactBeverley Johnson, Executive Director,lbby Jeppson, or Terri Shelton, ACCH,3615 Wisconsin Avenue, N.W., Washing-ton, D.C. 20016 (202) 244-1801.

The Chronic illness Teaching ProgramMichigan State University

Michigan State University offers a primarycare pediatric residency program thatfocuses on the developmental and behav-ioral aspects of children with chronicillness and their families. The specificobjectives of the prognm are:

to obtain an unders,anding of theimpact of chronic illness on the child,the family, the service providers, andsociety,

to acquire skills in the primary-caremanagement of chronic illness,

to understand the process of coordi-nating care with the family and withother health, education, and commu-nity professionals,

to develop attitudes and values asso-ciated with the support of the childand family autonomy, and

to.evaluate the effectiveness and suc-cess of their efforts based onimprovement or stabilization of func-tion rather than cure.

A critical component of the program isthe three-year, indepth experience with achild who has a chronic condition andhis or her family. The purpose is to en-able the resident to understand more fullythe social, financial, educational, andpsychological impact of the child's condi-tion and, with the assistance of the familyand other professionals, to develop theskills to address the child's and family'sneeds in a comprehensive fashion. Thefirst group of residents will complete theprogram in June of 1987 and the programhas plans to conduct a longitudinal studyof the graduates' involvement with chil-dren with special health care needs. For amore detailed description of the programsee, B. W. Desguin (1986), AmericanJournal of Diseases in Children, 140,1246-1249.

Roundhouse Conference on Children withDisabilitiesGrand Junction, Colorado

The initial concept of the conference wasjointly developed by a pediatrician, a par-ent, and an educator from Grand Junc-tion. Their hope was to design a confer-

18

Parent/Professional Collaboration

ence where parents and professionalscould meet together to "educate" eachother, to share information and feelingson issues surrounding children with dis-abilities, and to leave with renewed vigorand insight. The railroad term "Round-house" seemed appropriate: "a centerwhere locomotives turn around and headin a different direction." For the pastseven years, the main objective of theconference has been to provide a "safe"wmosphere for parents to interact withprofessionals. At the conference, no oneuses a professional title, and service pro-viders have an invaluable opportunity todevelop a new understanding and sensi-tivity to the issues of parents. The confer-ence is held in a retreat setting thatencourages informal interaction whereparticipants can receive not only informa-tion on current and future trends in thefield of disabilities but also have "freetime" where they can share ideas andfeelings. For information on this confer-ence, contact Effective Parents Project,Inc., 930 Ute Avenue, Grand Junction, CO81501, (303) 241-4068.

13

Ill

3 Sharing of Unbiased and CompleteInformation with Parents About TheirChild's Care on an Ongoing Basis in anAppropriate and Supportive Manner

1419

AM

INTRODUCTION

WHAT DOESIT MEAN?

The sharing of information between par-ents and professionals is an integral part ofz.ny family-centered care approach. If whatwe are aiming for in the care of childrenwith chrome illnesses or disabling condi-

At first glance, this element appears to bethe most simplistic and easily attainable ofall the aspects of family-centered care. "Ofcourse, we pass on information. Why mydevelopmental evaluation report was overfive pages long" may be heard from profes-sionals. "I've told all of them about hisdevelopment I milestones. Don't they talk toeach other?" is a frequent complaint of par-ents. While perhaps the most tangible of theelements, the sharing of informationbetween parents and professionals andamong professionals is akin to trading a frag-ile and precious commodity. The sharingmust be carefully nurtured.

What Are the Barriers?

Perhaps the greatest barrier to theexchange of information between parentsand professionals is what Robin Thomas(1986) has termed as a difference in "para-digms." In her interviews with families, shebecame aware of a very real difference in theway health care providers and families seethe world. "It was, in many cases, like a Mar-tian speaking to an Earthman" (Thomas,1986). Parents and professionals must findways to understand each other's "language."Sometimes the use of undefined or vagueterms can be the problem. One parentreports, "When they said 'delayed' I thoughtof all the trains going from New Jersey toNew York. Jeff's on a slower train, but he'sgoing to get to New York. They knew allalong he was never going to get to New York.Their 'delay' was my 'off the track' (Healy,Keesee, & Smith, 1985, p. 38).

Sometimes the difficulty arises when aparent, who is new to the health care system,tries to articulate his or her needs. As illus-trated by Rubin and Quinn-Curran (1983),

"Parents new to the search for ser-vices may not be clear about how tolabel the service they are seeking. Allthey may know is that a family memberneeds assistance. There are three stepsa parent must go through to gain accessto services. First, parents need to identify

Sharing of Information

tions is for "parents to join us cooperativelyas equals in this partnership" (Vincent,1985, p. 41), then parents must have readyand complete access to information.

what their needs aree.g., someoneelse to take over for awhile so they canget some rest. Second, they need totranslate their needs into the proper ser-vice labele.g., 'respite care.' Third,they need to contact the appropriateagency that delivers that service. Onlythe first step in this process is laminar tothe average parent. In the second andthird steps, parents must rely on theknowledge they have acquired, theirmemory, resourcefulness, and persis-tence" (Rubin & Quinn-Curran, 1983,p. 71).

Why Is the Sharing of InformationImportant?

For professionals who are accustomed toreceiving information and having access toeach other and to resources without diffi-culty, the importance of sharing informationwith parents may be underestimated and thedifficulty families have in accessing informa-tion, overlooked. Knowledge is power and". . . knowing what's going on, and partici-pating in whatever way you can, reducesanxiety" (Kaufman, 1985, p. 3).

Not only does the provision of informationhave an emotional impact, it is a critical fac-tor in enabling parents to participate fully inthe decision-making process. It is importantfor ongoing and daily decisions about thechild's care. It is critical for more basic deci-sions regarding the provision of medicaltreatment.

"We have been asked to make deci-sions, sometimes life-or-death decisions,on the basis of scanty or outdatedinformation. How can one possiblymake a decision for or against surgeryneeded to save the life of a child withDown's Syndrome twenty minutes afterher birth when one's only 'information'is inaccurate myth?" (Duffy, McGlynn,Mariska, & Murphy, 1984).

All parents, even those who have had pro-fessional training in related areas prior to thebirth of a child with special needs, require

15

information. The speed with which medicalknowledge and developmental interventionsare changing further highlights the need forup to date information in these areas forboth parents and professionals.

"Parents themselves need adequateknowledge of the range of support andtreatment facilities for the disorder inquestion. It is a rare parent who haseven the slightest knowledge of where togo or how to otrain the necessaryresources to get help for this youngster.Although we were a professional family,used to dealing with the helping profes-sions, many years passed before we feltwe fully knew the range and kind of ser-vices that could be available to our sonon a community, state, and federallevel" (Gallagher & Gallagher, 1978,p. 208).

What Information Should Be Shared?In a word . . . EVERYTHING ... from med-

ical information, to community resources, tosupport gtoups, to pros and cons of treat-ment choices.

"The more you know, the less scarythe future looks. Parents need to haveboth concrete information about theirchild's condition and prospects andwhat I will call emotional information.The hospital social worker gave us twobooks to begin with, one explainingwhat Down's Syndrome is and how earlyintervention helps and the other writtenby parents which let us know that theemotions we were experiencingeventhe ones we were ashamed of feelingwere not abnormal and that we couldand would move beyond them" (Duffy,1984).

Often the information needed to provideadequate care for children with specialneeds can be very technical. It is importantfor this information to be provided in under-standable terms. It is equally important tolink these explanations with medical termi-nology. Each profession develops a vocabu-lary that makes it easier to communicatewith other professionals. However, this tech-nical "shorthand" may impede the exchangeof information between parents and profes-sionals. Parents need both the layman'sterms to help them understand as well as thetechnical language that allows them tocommunicate with professionals and toresearch their child's condition on their own.

Information can also bring a sense ofpower and control to a family who may feel"more hostage than partner to a gang of

16 21

powerful professionals" (Oster, 1985, p. 27).it can also help to minimize the develop-ment of a dependent relationship betweenparents and professionals that can under-mine the competence of parents.

"Almost universally, the parents of at-risk and disabled children express, earlyin their experience, a sense of power-lessness in the face of their child's spe-cial condition. A habit of deferring toprofessionals for everything can easilydevelop in response to this sense ofpowerlessness. Such deference can benot only flattering to professionals, butits acceptance can be justified in thebelief that it is taking some load of deci-sion making from already burdened par-ents. . . . Dependence is encouragedwhen professionals unilaterally makedecisions which could more appro-priately be made by the parents in thelight of individual family styles, and thisdependence is not compatible with thegoal of building parental competence"(Healy et al., 1985, p. 39).

Sharing information can enable parents tooperate more independently, as partnerswith professionals and in some cases, intheir absence.

"One of the first things Jan, ourhome trainer, told us was that her goalwas not only to show us how to teachour daughter specific skills, but to teachus how to teach her so that if we everfound ourselves without services wewould still know how to facilitate prog-ress. After three and a half years of work-ing with Jan and my daughter, I know Iwould hate to see Jan goshe hasbecome a good friend as well as some-one whose professional abilities Irespect tremendouslybut she hascome close enough to her goal that ifwe were suddenly shoved out of the nestto fly on our own, I think we could. Inthese times of uncertain and shrinkingfunding for human services, it's a realcomfort to know we've learned well"(Duffy, 1984).

How Is Information Shared?

The way information is shared is perhapsthe most important factor that ensures thatthe giving of information is truly the sharingof information. How much information isshared and the timing of the communicationare critical factors in the parents' ability touse the information most effectively.

Sometimes professionals share too littleinformation.

"I gave the neurologist a list of ques-tions I had," said one mother, "includingthe fact that Angie's muscle tone didn'tseem to be anywhere near what itshould be. He ran a bunch of tests andthen sat down with me and said, 'Shehas hypotonia, which means she hasunderdeveloped muscles.' That was it.He got up and left. My pediatrician gaveme a copy of the report, and the neurol-ogist really did have a lot to say. He justdidn't want to say it to me" (Healy et al.,1985, p. 40).

Sometimes information is exchangedbetween parents and professionals but notwith other individuals who interact with thechild. If we recognize that the child does notexist in a social vacuum and that extendedfamily and other individuals have importantperspectives and provide care for thesechildren, information must be shared withbrothers, sisters, grandparents, and otherfamily members, and when appropriate, withthe child as well.

Sometimes in an effort to be responsive tothe families' need for information, profes-sionals may give too much. Because theinformation isn't just about any child, butabout their child, thD ramifications of eaclstatement, prediction, silence, or facialexpression take on greater importance forparents. Because of this, even apparentlyinnocuous questions and explanations cantake on overwhelming proportions. Informa-tion, particularly disturbing information, isdifficult for anyone to absorb fully. A family-centered approach facilitates an atmospherewhere ideas and questions can beexchanged between parents and profession-als and where the amount of and manner inwhich the child and family wishes to receivethe information can be understood.

Sometimes it may not be possible to shareinformation because there are no "answers"to the "questions." The admission of "I don'tknow" can be a very important piece ofinformation as well.

"Professional behavior must be tem-pered by humility. It is impossible tohave all the answers in regard to thediagnosis and treatment ofproblemsassociated with handicapping condi-tions. It was shocking arid humbling tome to come face to face against howmuch I did not know. I often wonderedwhat my professional colleagues wouldthink of me if I admitted to them that Ineeded help in solving particular prob-lems. It was important, albeit difficult,for me to learn to acknowledge my weak-nesses without apology or shame.Honesty and openness can be the keys

2

Sharing of Information

to genuine professional behavior. Learn-ing to say 'I don't know' can be thebeginning point of refining one's skills"(Turnbull. 1978, p. 136)

Sometimes professionals feel they mustresort to "mind reading" in order to provideinformation at a time when they feel the par-ents are ready. Because each family is differ-ent, however, this approach may not be aneffective one. A family-centered approachwould suggest that the best way to find outwhat families want is to ask them . . . but toask them in a way that is supportive.

"Every time another p ofessionalinterviewed me about them (mychildren] how I took care of them, andwhy, and wrote all this downI feltmore unsure. If they didn't comment, Ifelt it must be because they couldn'tthink of anything good to say, so I mustreally be failing as a parent" (Weyhing,1983, p. 126).

Here a potentially good exchange betweena parent and a professional has not been apositive one, particularly from the perspec-tive of the parent. Communication can beimproved if professionals explained morefully why they are asking certain questionsand if they are sensitive to parents' reactions.Parents can enhance the communicationprocess by helping professionals to under-stand how best to ask questionswhat issupportive and helpful, and what is intrusive.

While it is understandable that parentsmay feel uncomfortable telling a profes-sional directly that the way he or she asked aquestion was intrusive or not helpful, a par-ent can still encourage professionals to usemore successful strategies by telling themabout what they did like. Learning directlyfrom parents through their participation inprofessional training programs and by read-ing parent produced matelials on these sub-jects can help professionals understand howbest to share information. Sharing of infor-mation does not involve just a one time briefdiscussion. It is an ongoing process withboth parents and professionals havingresponsibility for the success of that process.

Why Share Information hi This Way?The benefits of a family-centered

approach to the sharing of information aremany. First, information that is shared inmanageable doses, with all family members,and with adequate time for follow-up con-versations is information that is more readilyused. While this may not eliminate the needfor repeating questions or answers, it doesfacilitate a quicker understanding of both the

17

parent's and the professional's perspective.This type of sharing can lead to clarificationof misunderstandings which, in turn, willenhance the quality of care for the child. It isthe quickest way to determine if programs

MAKING ITA REALITY

18

The sharing of information between par-ents and professionals can be facilitated in anumber of ways. As mentioned, the mannerand timing of the communication is criticalto the degree to which the information isabsorbed and subsequently used. Given thatall individuals process information differ-ently and considering the "charged emo-tional states" under which most families andprofessionals meet, the sharing of informa-tion can be maximized by providing it ver-bally, in written form, through media, and ifpossible by demonstration. Other mecha-nisms that facilitate the sharing of informa-tion include the following.

LibrariesBoth public and hospital libraries can be a

powerful mechanism for facilitating the shar-ing of information. Including informationabout parent-to-parent support groups,community services, resources that assistthe family as they care for their child, andspecific information on chronic illnessesand disabling conditions for adults as wellas for children would be very helpful forboth parents and professionals.

In addition to special collections withinexisting libraries, the establishment of a fam-ily resource library can further the exchangeof information. This type of library containsspecialized materials for adults and childrento help them understand and cope withhealth and family concerns. it can augmentexisting hospital, community, and state ser-vices by informing families ilae profession-als about important resources such as carefor a child with special health needs, avail-able community resources and how toaccess them, training in child growth anddevelopment, and assistance in finding anappropriate school replacement. For thoseinterested in establishing such a library, thepublication Guidelines for Establishing aFamily Resource Library provides sugges-tions on planning and staffing the library,selecting materials, considerations when dis-tributing medical information, selected hib-

23

and pr'licies are truly responsive to theneeds of the child and family. And finally, itis the cornerstone of effective parent/profes-sional collaboration.

liographies, and sample forms. The publica-tion is available from the Association for theCare of Children's Health (ACCH), 3615Wisconsin Avenue, N.W., Washington, DC20016 (202) 244-1801.

The Community Health InformationNetwoo: (CHIN)

This service is an example of publiclibraries in cooperation with a communityhospital providing access to medicalinformation for families. Families requestinformation on medical topics at the pub-lic library in five participating communi-ties in Massachusetts. The CHIN programcan provide a listing of available articleson requested topics and copies of articlesfrom publications in the Mount AuburnHealth Sciences Library. For furtherinformation, contact Ms. Cherie Haitz,Director, Mount Auburn Health SciencesLibrary, 330 Mount Auburn Street, Cam-bridge, Massachusetts 02238, (617) 492-3500, extension 3121.

Medical RecordsParent access to their child's medical

records is another important way that infor-mation can be shared between parents andprofessionals. The Federal Privacy Act gov-erns and allows all patients access to medi-cal records held by Public Health Servicefacilities, Veterans Administration hospitals,and military hospitals run by the DefenseDepartment. In other facilities, access tomedical records depends on the state wherethe families live. Only 11 states allow com-plete access to medical or mental healthrecords (Public Citizens' Health ResearchGroup, 1986). For more information on aspecific state's laws concerning access orfor assistance in reading medical recordsconsult the following publication, MedicalRecords: Getting Yours available from theHealth Research Group, 2000 P Street, N.W.,Suite 708, Washington, D.C. 20036.

Information Services

III National Information. System for HealthRelated Services (NIS)

This is a three-year project funded by theDivision of Maternal and Child Health.Through these funds, NIS has com-piled information on state programs,community and hospital services, andparent support resources related to chil-dren with special health needs. Theinformation can be accessed by consum-ers and professionals through a toll freenumber. The NIS currently serves eightsouthern states: Alabama, Kentucky, Mis-sissippi, Tennessee, Florida, Georgia,North Carolina, and South Carolina. Dur-ing the second year of the project, infor-mation from an additional twelve statesand the District of Columbia were addedwith complete implementation in all 50states to be completed by the end of 1987.The types of agencies listed on the NISinclude University Affiliated facilities pro-grams, State Crippled Children's Pro-grams, state level human services agen-cies, children's hospitals, nationalsupport groups and their local chapters,and novel or exemplary model programs.Each listing includes the agency name,address, telephone number, contact per-son, services provided, eligibility criteria,reintursement accepted, and informationabout agency operations. This informa-tion can be accessed through a 'oil freenumber: (800) 922-9234.

AUNT FAGS

This is an electronic bulletin board spon-sored by the National Resource Center onFamily-Based Services. Designed to pro-vide an exchange of cu,Tent informationon family-based services and access tothe Resource Center's library, AUNT FAGScan be accessed by any individual with acomputer, a modem, and a communica-tion software package. For more informa-tion, call (319) 335-4130.

Sharing o! Information

Education and Training ProgramsBetter Ways (of Breaking News toParents)

This i- a workshop for professionals con-ducted by Parents Helping Parents, Inc.(PHP), a non-profit, resource center andsupport group in San Jose, California. Theworkshop uses parents as teachers andcovers a number of topics including:"When to Tell", "What to Tell", and "Dis-cussing Institutionalization" along with anextremely helpful list of "Do's andDen't's" when communicating with a par-ent of a child with a disabling condition.For more information on this workshop,contact Florene Poyadue, PHP, 535 RaceStreet, Suite 220, San Jose, CA 95126(408) 288-5010.

Parent Training and Information Centers(PTI's)

The U.S. Department of Education, Officeof Special Education and RehabilitativeServices (OSERS), funds these centers(PTI's) in 38 states and the District ofColumbia. They are designed to provideinformation and training to parents aboutthe special education laws and servicesfor children with special needs. Parentcenters receive technical assistance fromTechnical Assistance to Parent Programs(TAPP). The contact information for theCentral Office and the four regional of-fices of TAPP is included in the chapteron Resources. For information regardingany of these programs contact: U.S.Department of Education, Office of Spe-cial Education and Rehabilitative Services(OSERS), Office of Special EducationPrograms, Division of Personnel Prepara-tion, Switzer Building, Room 4620, 400Maryland Avenue, S W., Washington, D.C.20202 (202) 732-1032.

24 19

4 Implementation of Appropriate Policiesand Programs that Are Comprehensiveand Provide Emotional and FinancialSupport to Meet the Needs of Families

20

7

')

25

INTRODUCTION

MI

In her book A Difference in the Family,Helen Featherstone (1980) talks about thefour ways that professionals can assist fami-lies who have children with special needs Inaddition to providing information, respectingthe child and the family, and providing emo-tional support, Featherstone mentions pro-viding services. If the philosophy of family-centered care is to be translated intopractice, then programs and policies mustbe developed that are comprehensive andthat provide support to meet the changingneeds of families.

WHAT DOESIT MEAN?

The first step toward implementing thiselement is understanding what "providingcomprehensive, emotional, and financialsupport" means. The impact of a child'schronic illness or disability can be seen in anumber of areas including the psychosocialadjustment of the child, the parents, thebrothers and sisters, and other familymembers; the parents' marriage; the family'sfinances; and even the parents' careers.Likewise, the ways in which these care andfamily support needs are addressed are notone dimensional. The suprort needs of fami-lies are diverse and varied and change overtime. These needs include but are notlimited to: respite care, home care manage-ment, equipment loan, sibling support,transportation to health services, greatercoordination of services, and parent-to-parent support. (Because so many parentshave attested to the overwhelming impor-tance of parent-to-parent support in theirefforts to care for their children, it will bediscussed in more detail later in this publi-cation.) Unfortunately the programs thataddress these needs are frequently unavail-able. Consider the following examples:

"Without a respite care program, theonly relief is an institution. It is a highprice for our Andrew to pay so that wemay have a vacation from the worries oflooking after him and spending timewith our other three children. It is aprice we are unwilling to ask him to pay.Yet the need to recoup is getting moredesperate and, as a result, the institu-tions loom closer" (Lukas, 1975, pp2-3).

"Do we ruin ourselves financially or

26

Comprehensive Support to Families

"Families have responsibilities formeeting many different needs Theseneeds are in the areas of economic, per-sonal, physical care, domestic care, restand recreation, socialization, self-definiton, affection, and educational/vocational. Children vary in the extent towhich they influence a family's ability tomeet these needs; the primary variablesare the type and severity of the disabilityand the availability or unavailability ofcommunity and family resources"(Turnbull & Turnbull, 1985)

place our child before he is ready?"(Bertaina, 1985).

"Like most other families, we were leftalone to sort out these complicatedemotional issues. Two things wouldhave helped: emotional support andinformation" (Oster, 1985, p. 31).

All three of these parents reflect some ofthe stress and frustration they have expe-rienced in caring for their children. Stresssometimes has been defined as an imbal-ance between the demands placed on anindividual and the available resources. Whileit may not always be possible to reducesome of the demands faced by these parentsand their children, family-centered care poli-cies and programs can provide resourcesthat support existing family strengths andthat balance the demands of care.

For example, hospital policies that main-tain family relationships and support theparent's role during hospitalization canreduce stress. In one study, Miles and Carter(1985) asked parents to identify staff behav-iors and policies that were helpful to themduring their child's hospitalization in a pedi-atric intensive care unit. The policy reportedas most important by the largest number ofparents was being permitted to stay withtheir child as much as possible. Not only dofamily-centered policies ease the parents'stress, they also can improve the ease withwhich medical procedures are completed.For example:

"I was told that parents were abso-lutely not allowed to participate (in theX-ray process). The baby, age about fif-teen months, was, without any warning,

21

strapped down tightly to a cold hardboard. Imagine how you'd feel if astranger came up, grabbed you whaoutwarning or explanation and tied youdown. Of course, Zack screamed andturned very blue for lack of oxygen. Hehad enough lung problems as it was.That never happened again. Either myhusband or I always went with him andheld him and there never was any prob-lem witl, the X-rays coming out well,which was the justification for usingboards and straps. We never had torepeat an X-ray" (Kaufman, 1985, pp.5-6).

The implementation of this element canalso be reflected in the creation of options toinstitutionalized care. Caring for children athome and ;r: their community can help tonfinimize the disruptive impact of the child'scondition and can maximize the growth anddevelopment of the child and his or herfamily.

"When Katie's doctors t Id us wecould take her home it seemed as if ourprayers were answered. All the learningprocesses seemed minute compared tothe joy of having us together" (Beckett,1985, p. 6).

To do this, however, the growing trendtoward home care and deinstitutionalizationmust not exceed the availability of necessary

MAKING IT AREALITY

22

The ways in which states, communities,and institutions can address the supportneeds of families are varied. The followingare examples of programs and policies thataddress family support needs.

Financial Policies

Individual "Katie Beckett" Waivers

Created in 1982, this individual waiverprogram is named after the first child toreceive one. These waivers providedstates an option for addressing the prob-lems of individuals who remained institu-tionalized because returning home forless costly medical treatment would resultin the loss of SSI and Medicaid eligibility.These waivers permitted states to provideregular state Medicaid services by waivingincome "deeming" or eligibility rules on acase-by-case basis. States applied to anHHS review board on behalf of a child for

27

support programs such as in-home nursingand respite care that make this care at homepossible. Financing mechanisms to pro..:dethis care must also be available.

"It is an amazing paradox that insti-tutional care for Adam would cost$35,000 to $65,000 per year but the fed-eral and state governments are willing tospend only $2-3,000 per year to help uskeep Adam at home" (Bertaina, 1985).

"If I said to the state, 'Take her, she'syours,' it would cost the taxpayers$50,000 per year to put her in an institu-tion. I don't want $50,000 or even $5,000.I would be satisfied to have the part-timehomemaker back so the wife and chil-dren can get out fora few hours" (Cohencited in Cina & Caro, 1984, p. 45).

Creative and coordinated approaches tofinancing these support and health servicesare needed. Having the "child follow themoney," where the family must attempt tomeet varying agency eligibility criteria in aneffort to procure the services needed, canlead to frustration and fragmentation of ser-vices. In contrast, having the "money followthe child," where available sources of fund-ing can be pooled to address the child'sneeds, could lead to better coordinated andmore supportive services.

a waiver of the "deeming" rules providedthat deinstitutionalization would result inMedicaid savings and that the quality ofcare would be maintained. "Katie Beck-ett" waivers approved or applied for priorto December 3L 1984 continue to befunded; no new applications are acceptedafter that date.

Regular 2176 Waivers

The "regular" Section 2176 Waivers estab-lished by the Omnibus Budget Reconcilia-tion Act in 1981, allow states to offer awide array of home- and community-based services for individuals who wouldotherwise require care in a skilled nursingfacility, intermediate care facility, orhospital. States must specify a projectednumber of people to be served from oneof the following three categories of Medi-caid recipients: aged or disabled, or both;mentally retarded or developmentally dis-

abled or both; or mentally ill. The objec-tive of the waiver is to prevent or delaytreatment in institutions by substitutingless costly home- and community-basedservices. States must provide assurancesthat average per capita Medicaid costswill not increase as a function of thewaiver. The waivers are for a three yearperiod and can be renewed for five yearperiods. There is no limit to the numberof waiver requests a state may submit.

Model 2176 Waivers

In December of 1982, the Health CareFinancing Administration (HCFA) devel-oped a "model" 2176 waiver. The waiverwas specifically developed to providehome- and community-based care forindividuals who otherwise would havebeen eligible for Medicaid only if theyreceived care in an institution. It is similarto the regular waiver except that it canserve no more than 50 individuals withdisabilities or visual impairments at anygiven time and that the Social SecurityIncome (SSI) eligibility requirementsmust be waived to allow Medicaid tocover noninstitutional services. Statesmay designate specific groups of individ-uals with disabilities to receive servicesbut are required to offer only one home-or community-based service in additionto those provided by regular Medicaidprograms. States can admit only thoseeligible individuals whose estimatedhome care costs are below the estimatedcosts for institutionalization.

State Plan Amendment

States also have the option of amendingtheir state plans to provide regular Medic-aid coverage to children with disabilitiesunder the age of 19 living at home who,because of the SSI eligibility rules, wouldonly be eligible for Medicaid if they wereinstitutionalized. Only the normal range ofcovered Medicaid services in that stateare available under this option. Specialservices cannot be added solely for thisparticular group. States must determinethat home care is appropriate and lesscostly than a similar level of care at aninstitution. Once the plan is amended, allchildren meeting the eligibility criteria areallowed to participate whether or not theyare receiving care in an institution

Thirty-three states were serving childrendependent on technology or with physi-cal disabilities through a waiver as ofApril, 1986. Eight states were providi'home care services under a regula. .76waiver with 14 states providing benefitsthrough 19 separate Model 2176 waivers.

28

Comprehensive Support to Families

Nine states (with one pending) hadamended their state plans and 14 stateshave individual "Katie Beckett" waivers.Together these options have been serving938 children who include those depen-dent on technology, those with centralnervous system disorders (e.g., cerebralpalsy or spina bifida), those with congen-ital, metabolic, or immune disorders orinjury-induced trauma.

Individuals interested in obtaining addi-tional information on waiver programsmay contact their state Medicaid agency,Services for Children with Special HealthNeeds (formerly Crippled Children'sServices-CCS), or their State Departmentof Health. State personnel interested inmore information on the process ofdeveloping a waiver program should con-tact the Health Care Financing Adminis-tration, Department of Health and HumanServices, Washington, D.C.

State Programs

Michigan Family Subsidy Program

This program is designed to pay for spe-cial expenses the family incurs while car-ing for a child with significant disabilities.This financial support may prevent ordelay institutionalization or may enable achild to return home. The program recog-nizes that each family has differing andunique needs that often cannot be met byspecific agency cervices. Thus, every fam-ily that meets the eligibility criteriareceives $225.00 per month to use as theywish Families may use the money forphysical therapy for their child, for altera-tions to their home to accommodate med-ical equipment, or for a much neededfamily vacation. Not only is the familyallowed this flexibility but the programsaves money for the taxpayer by avoidingand/or reducing the need for more costlyout-of-home placements. For additionalinformation contact the MichiganDepartment of Mental Health, Lewis CassBuilding, Lansing, MI 4892 (517)373-3740.

Medically Fragile Children's Program

MFCP is an innovative family-based sup-port program established in 1984. Thisprogram provides in-home nursing andother health services to families withchildren who have both a life-theateningmedical condition and a developmentaldisability. The program enables familiesto care for their children at home ratherthan in a hospital or institution. It was

23

24

through the advocacy efforts of a state-wide coalition of parents of children withspecial needs, called Parents ReachingOut (PRO), that legislation was enactedwhich allocated state matching fundsthus establishing MFCP through a federalMedicaid Waiver. For more informationcontact: Georgia Clever ley, CoordinatedCommunity In Home Care (CCIC), PERABuilding, Room 516, P.O. Box 2348, SantaFe, NM 87504-2348. (505) 827-4923.

U Texas Respite Resource Network

The Texas Council for DevelopmentalDisabilities initiated the Texas RespiteResource Network (TRRN). TRRN is aclearinghouse with information for par-ents and professionals on respite careservices in Texas as well as in other areasof the country.

TRRN also is

examining existing services to deter-mine the components of successfulprograms and to make recommenda-tions regarding the types and range ofservices that should be available tofamilies;

developing two directories, one thatdocuments services statewide and onethat documents services nationally;and,

delineating guidelines for model re-spite care programs and developing aseries of training materials for respitecare providers.

For more information on the network orr.,n the directories of state and nationalrespite care programs contact: JenniferCernoch, Ph.D., P.O. Box 7330, Station A,San Antonio, TX 78285, (512) 228-2576.

Community ProgramsFamily Friends

This project, developed by the NationalCouncil on the Aging, Inc., is an uniqueintergenerational project that uses seniorcitizen volunteers to work one-on-onewith children with chronic illnesses anddisabling conditions and their families.

Family Friends:

provide emotional support throughtalking and listening;

offer educational activities such ashelping with school work;

29

assist parents in providing somelimited daily care for the child such asfeeding and dressing,

help parents in teaching their childrenabout self-care; and

act as advocate for the child and familyin obtaining services or informationthey need.

For more information on this project con-tact: Meredith Miller, Ph.D., Project Direc-tor, or Jane Diao, M.S.W., Program Asso-ciate at Family Friends Project, NationalCouncil on the Aging (NCOA), 600 Mary-land Avenue, S.W., West Wing 100,Washington, DC 20024, (202) 479-1200.

Legislative Policies

Children's Justice Act

In August, 1986 Congress enacted legisla-tion to initiate temporary non-medicalchild care (respite) services for familiesof children with disabling conditions orchronic illnesses. The act, known as theChildren's Justice Act, incorporates tem-porary respite care for children with spe-cial needs to alleviate social, emotional,and financial stress among the families ofsuch children.

Pending the appropriation of funds, theChildren's Justice Act would establish ademonstration program of grants to statesto assist private and public agencies andorganizations in providing in-home andout-of-home respite care for children withspecial needs. Such care would be pro-vided on a sliding fee scale with hourlyand daily rates.

The legislation was developed by theSelect Committee on Children, Youth andFamilies of the U.S. House of Representa-tives, Congressman George Miller, Chair-man. For additionc,! information aboutthis legislation, contact Jill Kagan at theCommittee, Room H2-385, House Annex2, Washington, D.C. 20515, (202)226-7660.

P.L. 99-457

Depending on how states choose to par-ticipate, Public Law 99-457, the Educationof the Handicapped Amendments Act of1986, has the potential to be a policy thatwill be very supportive of families ofyoung children with special needs. Signedinto law on October 8, 1986, P.L. 99-457provides incentives to states to serve an

additional 70,000 children ages three tofive years with disabling conditions andcreates a new program to address thespecial needs of infants and toddlers,birth through age two, with disablingconditions and their families.

Of particular interest is Title I of the b:llwhich establishes a new discretionaryprogram for infants and toddlers.Included in this program is a comprehen-sive list of services that could be offeredsuch as family training, counseling, andhome visits; special instruction; speechpathology and audiology; occupationaltherapy; physical therapy; psychosocialservices; care coordination (case man-agement) services; medical services onlyfor diagnostic or evaluation purposes;early identification, screening, and

30

-`

Comprehensive Support to Families

assessment services; and health servicesnecessary to enable the infant or toddlerto benefit from other early interventionservices. Section 677 of the Act alsorequires that the family of each infant andtoddler have an Individualized FamilyService Plan (IFSP). The IFSP must con-sist of a multidisciplinary assessment ofthe child's and family's needs and a writ-ten family service plan developed by amultidisciplinary team, which includesthe parents or guardian, that lists themajor outcomes expected and recom-mendations for needed services. This lawhas the potential to be very supportive offamilies by addressing the issues of theentire family and by providing more com-prehensive and better coordinatedservices.

25

5 Recognition of Family Strengths andIndividuality and Respect for DifferentMethods of Coping

31

INTRODUCTION This element embodies two complemen-tary concepts. The first is that family-centeredcare must reflect a balanced view of the childand family. That is, in assessing and attempt-ing to address the child's problems, thechild's and the family's strengths and resou--ces must be considered as well. Secondly, theindividuality of the child and his or her familyand their different methods of coping must berespected and supported.

WHAT DOESIT MEAN?

Recognition of Child and FamilyStrengths and Individuality

Too often, the focus of assessment andprogram planning has been on the child'shealth or developmental problems alone.Ignoring strengths in the planning processoften creates an inaccurate picture. Manychildren with special needs and their familiespossess far more strengths than needs andexperience more successes than failures.Furthermore, focusing only on the needs mayresult in a "self-fulfilling" prophecy.

Professionals can play an important role inidentifying a child's strengths. This approachcan make a positive difference in the interac-tion between professionals and parents, andmore importantly in the parents' interactionwith their child.

'Sometime after Nicholas had startednursery school I saw a grainy, black andwhite videotape that demonstrated whatDr. Brazelton calls the 'irresistibleresponsiveness' of a premature baby. Ialmost cried while I watched as a 3 lb.preemie slowly followed a ball with hiseyes, looked for the sound of hismothers's voice, and with heroic effort,finally turned his head and even reachedfor her. A nurse practitioner had taughtthat mother to read the subtle cues thatcould have drawn me to my son so muchearlier. It was a piece of information, ateachable skill, that might have changedthe course of our lives" (Oster, 1985. p.31).

Recognizing and supporting the parents'strengths and resources is just as importantas recognizing them in the child. The emo-tional and educational benefits of thisapproach are reflected in Ann Oster'scomments.

32

Reccgnition of Family Strengths

"Exceptional parents are not justmothers and fathers. We are paraprofes-sionals, physical, feeding and occupa-tional therapists. We are programdesigners, service coordinators, nursesand advocates. In addition, we are hus-bands and wives, sons and daughters,home makers and breadwinners, parentsof healthy children and creative budgetmanagers. Most importantly, we are indi-viduals" (Downey, 1986, p. 8).

"The individuals stand out whohelped me begin rebuilding a sense that Iwas worth something the nurse who satand talked with me when she had time,and loaned me a nursing text when I wasfrustrated by my ignorance; the child lifeteacher who asked how was I doing andthen sat down to listen as I told her; thephysical therapist who celebrated Nickfor what he could do instead of defininghim by his disabilities" (Oster, 1985, p.27).

Respect for Different Methodsof Coping

Becoming more aware of a child's and fam-ily's strengths is a crucial step in recognizingtheir individuality and respecting theirmethods of coping. Sometimes though, well-intentioned professional efforts that are aimedat understanding and supporting families mayresult in just the opposite. This is particularlyevident with respect to the issue of labeling.The use of labeling is often justified as neces-sary because it facilitates a child's placementinto pre-existing programs or enables finan-cial resources to be allocated. While it isimpossible to totally eliminate the use oflabeling, a family-centered approach encour-ages the use of flexible categories and whennecessary, the use of diagnostic terms in assensitive a manner as possible. By not"categorizing" children to fit those services orprograms that already exist in the community,comprehensive services can be more easilytailored to the child and family and new andcreative programming may be established asthe result of the identification of new serviceneeds

27

28

Sometimes families may be labeled.

"Parents of developmentally disabledchildren have been ascribed many roles.They have been perceived as tragic vic-tims and advised to institutionalize theirchild at once. They have been seen assilent observers of their child's profes-sional treatment and given a spot on theother side of the one-way window. Theyhave been viewed as patients with dis-abling emotional sequelae, and havebeen invited into therapy for themselves"(Baker, 1983, p. 55).

They have been viewed as "noncompliant,"which may be as much a result of inapprop-riate or poorly explained recommendationsrather than a conscious desire to ignorerecommendations or an apathetic response(Cadman, Shurvell, Davies, & Bradfield, 1984).Recognizing and respecting the individualityand strengths of families will only serve tostrengthen their self-confidence and to pro-vide a strong trameworic for parent/profes-sional collaboration.

While there are issues that are common tofamilies whose children have special needs,care must be taken to respect each family'sindividuality in their adaptation to their chilk.'sneeds and to address their goals for theirchild. For example, some have suggested thatthe large body of research identifying discrete"stages" of adaptation may inadvertentlyignore the individuality of a family's copingresponses.

"Many writers invoke the notion ofstages to describe parents' changingresponses to a child's handicap. Certainlythese stage models tell a part of the story:people do change; many follow rathersimilar paths; for the most part, lifeimproves. I think, however, that moststage theories oversimplify a complexand diverse process. Just as not all dyingpeople pass through Elisabeth Kubler-Ross' well-known stagesdenial, anger,bargaining, depression, andacceptancemothers and fathers of thedisabled travel in many different direc-tions when they move beyond despair.This is presumably why theorists argueabout the number and the character ofthe stages" (Featherstone, 1980, p. 10).

These theories have their place and can bevery helpful to professionals as they attemptto anticipate and address the changing needsof families. A family-centered approach tocare involves using these theories as aframework while approaching eau familyanewlistening to their individual needs andstrengths rather than attempting to "fit" theminto a pre-existing scheme.

33

"Although we may be able to general-ize to the extent of predicting the likeli-hood of parental anger or fear or denial,the specific manifestations of these emo-tions are as varied as the individuals whofeel them. The only way to discover whatany collection of human beings needs isby listening to each one" (Oster, 1985,p. 27).

A family-centered approach also involvesrespecting cultural and socioeconomic differ-ences. Understanding, respecting, and incor-porating a family's values intc the planningfor their child is as critical to the success ofthe child's care as a consideration of thechild's level of development or medical diag-nosis. This 'lay become very difficult whenprograms designed to assist families unwit-tingly conflict with prevailing values withinthe families' community. Cleveland (1983)makes the following observation of Asianfamilies.

"There is a high degree of shameassociated w: ') receiving charity medi-cine and welfare. One of the largestsocial problems confronting the Chinesefamily, particularly with regard to obtain-ing health care, is the cultural value offamily pride and personal face. Thisvalue influences the elderly Chinese andinhibits their ability to reveal their imme-diate needs to the public agencies ofsocial service and health care. The loss offace is translated as subjecting one toembarrassment and shame but it is morethan an individual shameit reflects notonly on the individual but also on theentire family. It is connected with failure,a loss of respect, trust, and a loss ofintegrity" (Cleveland, 1983, p. 17).

Similar conflicts in values can exist withrespect to differences in religious beliefsand/or socioeconomic differences. As oneupper middle class father whose son has cys-tic fibrosis said,

"When we finally realized that wewere going broke, we had to face the factthat we needed help from someplace,and that someplace was going to be thegovernment. My family? On welfare? Noway. But eventually 1 'rad to do it; I had toaccept public monies for my son's hospi-tal costs. It was a long time before I couldtell my neighbor about that" (Shayne &Cerreto, 1981, p. 13).

While it may be difficult for all programsand policies to be specifically tailored to eachindividual child's and family's needs, whenparents and professionals collaborate it facili-tates the development of programs thatrespect individual strengths and values.

MAKING ITA REALITY

This aspect of family-centered care can beencouraged by examining public awarenessof the terminology that is used when referringto children with disabilities and their familiesWhile some may say it is merely semantics,using the term "child with cerebral palsy" asopposed to the "cerebral palsied child" mayhelp parents and professionals to rememberthat a child with a chronic illness or disablingcondition is a child first. A recent article byCard Jefferson (1986) entitled "DisabilitiesThe language We Use" addresses this issue.

"People with disabilities are corn-munplace in our lives and it is our [pro-fessionals] responsibility to do somethingspecial to sensitize the general public totheir uniqueness and worth by the lan-guage we use in our everyday communi-cation. There needs to be a change innegative attitudes about people with dis-abilities into positive thoughts andactions" (Jefferson, 1986, p. 5).

The article goes on to suggest some alter-natives to phrases that are often used. Forexample, she suggests "using a wheelchair"as opposed to "wheelchair bound" andreplacing the words "victim" or "afflicted"with "a person who has." Jefferson concludes,"by changing our attitudinal barriers, andusing a more positive communication stylewe can eliminate the myths and misconcep-tions about people with disabilities" (Jeffer-son, 1986, p. 6).

Programs

It is important to offer a variety of supportprograms so that families can decide whatwould be of the most help to them The fol-lowing are examples of programs that aredesigned to provide a range of options tofamilies.

Candlelighters

This national support orgar,ization for fam-ilies whose children have cancer, feels thatnot every parent wants to attend a regularlyscheduled parent-to-parent support group.Yet, they still may want access to anotherparent from time to time. To address thisneed, some regional groups have set up ahotline where parents can call anony-mously.

"The Connecticut Candlelighters have atelephone lifeline which has become adaily vehicle for the emotional support offamilies in their area. It is a credit cardnumber funded by a local foundation. The

34

Recognition of Family Strengths

line has been used heavily for informa-tion. . Most commonly it is used to letout pent-up emotions, and to share goodnews when a child has successfully com-pleted surgery or chemotherapy" (Pizzo,1983, p. 97).

For more information contact: Candle-lighters, 2025 Eye Street, N.W., Suite 1011,Washington, DC 20006 (202) 659-5136.

Iowa Health Care Guidelines

Funded by the Federal Division of Maternaland Child Health, the Iowa Health CareGuidelines Project is one example of howthis element of family-centered care can beencouraged. Originally, the purpose of theprt jest was to develop model guidelines toassist physicians who provide services tochildren with chronic illnesses or disabili-ties. However, the project staff quickly rec-ognized that these children and familiesinteract with so many professionals thatadditional guidelines for nurses, socialworkers, and therapists were developed.Similar guidelines were developed by andfor families to assist them in the selection,implementation, coordination, and evalua-tion of services for their child. The devel-opment of the guidelines and the "Princi-ples of Health Care," which provide thephilosophical basis for the guidelines andare intended to promote optimal healthcare for all children and their families,reflect the joint contribution of familieswhose children have special needs andprofessionals from multiple disciplines.

Specific guidelines are included that stressthe importance of recognizing the child'sand family's strengths and respecting theirindividuality. The following suggestions arelisted in the family guidelines.

"Look at family members' individualstrengths, and your strengths as a unit. Usethese strengths, which have helped youbefore, in this new situation. You may wantto seek assistance from a counselor orparent-support person to evaluate objec-tively and follow the emotional and mentalhealth of the family."

"Help professionals understand your fami-ly's particular set of circumstances. Yourrelationships, beliefs, emotional status andstyle of life, as well as your financial situa-tion are relevant to setting up an effectiveand workable care plan for your child"(Healy & Lewis-Beck, 1987a, p. 17).

29

Similar suggestions are found in the guide-lines for professionals:

"Ask about parents' goals and priorities fortheir child. Emphasize a positive outlook,noting the child's strengths and abilities."

"Consider each family's circumstance on acase-by-case basis. Assist the family in eval-uating how many areas of their lives maybe affected by their child's condition suchas their employment situation, relation-ships with other family members, theirfinancial status. Allow parents to explaintheir individual family circumstances: Dothey have an elderly parent at home?

Another child at home with a chronic con-dition? An uncertain employment situa-tion? Transportation problems? A need forrespite care?" (Healy & Lewis-Beck, 1987b,p. 17).

Copies of the guidelines may be obtainedby contacting: Campus Stores, 208 G.S.B.,The University of Iowa, Iowa City, Iowa52242. Ask for the publication by authors(Alfred Healy, M.D. and J. Arline Lewis-Beck, Ph.D.) and by specific guidelines(i.e., for families, physicians, nurses, socialworkers, or therapists).

6 Understanding and Incorporating theDevelopmental Needs of Infants, Children,and Adolescents and Their Families IntoHealth Care Systems

36

11MBENEMAMMI

31

II INTRODUCTION

WHAT DOESIT MEAN?

32

Embodied in this statement is the idea thatfamily-centered care goes beyond the child'shealth care needs. It strives to recognize andto promote healthy family functioning by enabling the child and family fo meet "normal"developmental tasks.

The fields of health, medicine, social work,psychology, education, and others have madegreat strides in the treatment of chronicillnesses and disabling conditions. However,these advances may have unwittingly encour-aged a type of professional specialization thatmay interfere with a comprehensive approach

For the child, this approach means p' _ri-fling a developmentally appropriate programthat incorporates individual strengths andneeds.

"A major gap in our health system is amodel that will also help families under-stand and support their child's emotionaland social development, while taking intoaccount his or her specific physical, neu-rologic, and cognitive capacities. It isonly by placing emphasis on the fullscope of the child's needsemotional,developmental, and intellectual, as wellas physicalthat realization of thechild's full potential can be assured"(Nover, 1985, p. 9).

For example:

How do you safely encourage bodymovement and activity in a toddler withhemophilia?

How can the effects of a child's separa-tion from a parent during hospitalizationbe minimized?

How can you encourage a ten-year-oldchild with asthma to take his medica-tion at school when he is concerned itinterferes with his ability to establishpeer relations?

How do you address the concerns ofindependence and sexuality in an ado-lescent with cerebral palsy?

How can you help a child or adolescentwith special needs celebrate the transi-tions that are important in his or herlife?

All aspects of a child's development areintegrally rt.lated. This is true for children withspecial needs as well as for healthy children.

37

to helping the child and his or her family tomeet day-to-day developmental challenges.The importance of this consideration isclearly stated by a mother of a child with arare genetic disease.

"Regardless of handicapping condi-tions, our children have the same needsas able-bodied children. Handicaps andmental retardation do not cripple theirinnate desire to grow, to develop, to beaccepted, to belong, to be loved and tolove" (Downey, 1986, p. 1).

And yet, our methods of delivering anddesigning services may not reflect this reality.This compartmentalized approach can lead toa fragmentation of services (e.g., the physicaltherapist takes the legs, the speech therapisttakes the mouth, the cardiologist takes theheart) or to a lack of attention to other impor-tant areas of development. At times, ".. . thechild's emotional and social developmenthave taken a back seat to his more easilydetectable disabling condition" (Nover, 1985,P. 3).

While it is important for parents and pro-fessionals to work together to address thechild's specific health care needs, parents andprofessionals must also collaborate on facili-tating other areas of the child's development.

The parents' capacity to interprettheir child's behavior, to understand hisdevelopmental needs and to be able toparticipate actively in facilitating hissocial and emotional developmentgiven his handicapsmay, in certaincases, be more important than providingmotor exercises to encourage physicaldevelopment. The emotional milieu ofthe family, for example, will affect thechild's interests, motivation, and thedegree to which he practices emergingskills" (Nover, 1985, p. 4).

Attending to the "developmental" needs ofthe other family members is just as importantas it is for the child with special needs. Par-ents, in their roles as adults, as professionals,as partners in a marriage have developmentalneeds as well. Often the parents may be soinvolved with carrying out recommendations,in caring for the child, and attending to his orher health and therapeutic needs that theyhave little spare time to enjoy being a family

. to just be parents.

'The vast majority of services forthese children directly and extensivelyinvolve the child's mother as therapist,teacher, trainer, or, at the least, transpor-ter. . . . There is little time, money, orenergy for the development of normalinterpersonal relationships between oramong the family members, much lessoutside of it" (Doemberg, 1978, pp107-109).

A family-centered approach addressesthese issues, both directly through programplanning and indirectly by creating an atmos-phere where parents feel comfortableaddressing these issues themselves.

"The speech therapist says, Do halfan hour of therapy after dinner.' The phys-ical therapist says, Do 30 minutes oftherapy in your spare time.' What sparetime?! I have two other kids and a hus-band! I finally said 'no' to all that therapy.I had to choose between being my child'sextension therapist and being his mother.And I chose being his mother.

There are times when even an acceptableamount of therapy becomes too muchWhen your child needs time just be achild, or when you need time to be withthe rest of the family. It's O.K to say 'no'at those times, for a while. Your instinctwill tell you when" (Simons, 1985, p. 51).

Brothers and sisters of a child with achronic illness or disabling condition alsoface special challenges as they grow anddevelop and adapt to having a family memberwith special needs. Although each brotherand sister is unique, many of them no matterwhat the disability their brother or sister has,share a number of concerns and needs.

Like parents, brothers and sisters needinformation about their brother's or sister'scondition. Featherstone (1980) and othershave written about the anxiety that comesfrom the fear of "catching" the disability orthe guilt that somehow an "evil thought"about the brother or sister caused the illness.This normal, magical thinking, especiallycharacteristic of younger children, can causeproblems without appropriate information.

As more children with special needs arecared for at home and in the community,brothers and sisters are increasingly involved

Incorporating Developmental Needs

in their care. While this role has some advan-tages, it also may be a role that at times theyare ill prepared to assume. As a result of thisincreased involvement, brothers and sistersmay not have adequate opportunities to meetthe developmental challenges so necessaryfor normal growth.

These typical developmental challengescan seem insurmountable at times for broth-ers and sisters.

"Siblings are caught between twoworlds. the outside world and the worldat home. These worlds place very differ-ent demands on them, and they want todo well and be loved in both. Outside thehome, a premium is placed on normalcy.All children, through their adolescentyears, want to be as much like otherchildren as possible They want their fam-ilies to be as much like other families,too.

Within the family, children want almostthe opposite. They want to stand outtofeel special in their parents' eyes. Havingto compete with a brother or sister whoreally is 'special' is difficult" (Simons,1985, p. 34).

Sibling rivalry and feelings of anger, worriesabout who will care for their brother or sisterin the future, competition for parents' timeand attention, and what to tell friends are justa few of the issues that parents and profes-sionals can help brothers and sisters address.There is no way to avoid the changes thattake place in a family following the birth ordiagnosis of a child with special needs. How-ever, with support, brothers and sisters can behelped to be a part of the family's adaptationto those changes.

"It is also frustrating and maddeningwhen she messes up a room I just tidiedup, or when she gets into my school artwork that I have just spent the eveningon. There are many incidents like thesethat bring negative feelings. They aresmall and perhaps silly, but they still existand bother me. But, who is perfect?Besides, when Kim comes along and laysa big, wet kiss on my cheek and says 'Ilove-a-love-a-love-a-love Melissa,' it iseasy to forget the anger that just tookplace" (Hanson, 1986).

33

iu.....MAKING ni The following are some concrete examples

of programs as well as some suggestions of

A REALITY ways to assist children and families as theyface developmental tasks.

34

Programs

The Adolescent Autonomy Project

Funded by the Department of Health andHuman Services, Division of Maternal andChild Health, this project is designed topromote independence in adolescentswho have a physical disability or chronicillness. Using structured interviews and avariety of exercises focusing on assertive-ness training and health education, theprogram hopes to increase the adoles-cent's knowledge about normal puberty,his or her disability, and to enhance his orher ability to plan for the future. For moreinformation contact: Sharon L Hostler,M.D., Children's Rehabilitation Center, 2270Ivy Road, Charlottesville, VA 22901 (804)924-8184.

Camps

Camps specifically designed for childrenwith special needs offer supervision of thechild's medical regimen while providing animportant opportunity for children tointeract with other children, to gain inde-pendence from parents, and to have anexperience in common with able-bodiedpeers. Examples of some of these campsare:

Camp Ozawizeniba in Minneapolis,Minnesota for children and youth withepilepsy. For further information con-tact: Vicki Florine, 2701 UniversityAvenue, S.E., Suite 106, Minneapolis, MN55414 (612) 376-5031.

Camp Glyndon in Baltimore, Marylandfor children with diabetes and their fam-ilies. For further information contact:Dan Markowitz, Camp Glyndon, 3701Old Court Road, Executive Park, Suite#20, Baltimore, MD 21208 (301)486-5515.

Camp Sunshine in Portland, Maine forchildren with cancer and their families.For further information contact: JulieRussem, Childhood Cancer SupportProgram, 1921 West Street, Portland, ME04102 (207) 775-5481.

Camp Latgawa in Eagle Point, Oregonfor children with spina bifida and theirfamilies. For further information contact:Theresa Schneider, 1664 Hammel Road,Eagle Point, OR 97524 (503) 826-6194.

Camp Kaleidoscope in Durham, NorthCarolina for children with chronicillnesses who share space and activitieswith well children attending Girl ScoutCamp. For further information contact:Thomas K. Kinney, M.D. or Alex Gordon,M.Ed., P O. Box 2916, Duke UniversityMedical Center, Durham, NC 27710.

The 1987 Parents' Guide to AccreditedCamps includes listings of camps forchildren with special needs as well aschildren without disabilities or healthimpairments. The directory is availablefrom the American Camping Association,100 Bradford Woods, Martinsville, IN46151, for $8.95.

Chronic Health Impaired Program (CHIP)

CHIP is a federally funded program in Bal-timore, Maryland. Its purpose is to providespecial services for children who have fre-quent, extended, or intermittent absencesfrom school and who need to keep up withclassroom work. Referrals are madeby community or hospital-based physi-cians and social workers. Children fromelementary grades through high school areincluded in the program.

The CHIP program involves the parent asan active partner in initiating services.When a child is ill, the parent calls theschool and home instruction begins atonce. If the child falls behind because ofperiodic problems, the CHIP teacher mayprovide extra tutoring at home even afterthe child has returned to school. It isimportant to note that many of the childrenenrolled in the CHIP program are not inneed of special education, but rather con-tinuity of regular programming. CHIP alsoincludes counselors who work with thefamilies and the children on psychosocialissues. For more information contact: JoanCirce or Sylvia Matthews, CHIP, BaltimoreCity Public School System, Baltimore, MD21217.

Let's Play to Grow

Established in 1979 by the Joseph P.Kennedy, Jr. Foundation, Let's Play to Growis a program developed by Mrs. EuniceKennedy Shriver. In her words, "it is a pro-gram dedicated to bringing the physicaland spiritual delights of play to all familieswho have a member with special needs.Through play, mothers, fathers, sisters,brothers, relations and friends come toshare a close and creative relationship."

39

The organization consists of family clubsacross the country chat provide opportuni-ties for all family members to get togetherwith other families who have a child withspecial needs to enjoy adapted recrea-tional activities and support. The nationaloffice offers a variety of resources includ-ing a series of play guides showing parentshow to adapt recreational activities fortheir child. For more information contactLisa Morris, Program Coordinator, Let'sPlay to Grow, 1350 New York Avenue, N.W.,Suite 500, Washington, D.C. 20005, (202)393-1250.

General Suggestions for MeetingDevelopmental Needs of Children

Other ways this element can be imple-mented include:

Incorporating Developmental Needs

primary nursing care that encouragesconsistency in caregivers,

community vocational rehabilitationprograms,

providing age appropriate activities forchildren who are hospitalized throughchild life programs and hospital schoolprograms,

providing discipline and setting limitsfor a child with special health careneeds.

setting aside time and learning ways tobest facilitate play, and

encouraging independence by lettinggo

40 35

7 Encouragement and Facilitation ofI Parent-to-Parent Support

There are numerous ways in which publicand private agencies can support families intheir efforts to care for their children Thissupport can take many forms, such as careprovided by professionals, financial assist-

During the 1986 ACCH Parent NetworkMeeting over 80 parent- representing 31 stateswere asked to consider t..e concept of family-centered care. These parents stressed thatparent-to-parent support is one of the keyelements of family-centered care. It is one ofthe most important forms of support for fami-lies of children with special health needs andat the same time, one that is the least under-stood and least supported by the professionalcommunity. While professionals certainlyprovide support to families in many formaland informal ways, the support that anotherparent offers ..- unique. Both types of supportare needed.

"What parents offer other parents,through literature and friendship andorganized peer support, is respectwithempathyand without the burden ofclinical assessmenta precious resourcefor families in crisis. Ideally, the survivalskills that only parents know are added tothe rich expertise of professionals, whocure and teach and understand in a dif-ferent way" (Oster, 1985, p. 28).

Why is this form of support so important toparents? Consider the following statements oftwo mothers.

"When my third daughter, Sara, wasborn with Down's syndrome, isolation iswhat I felt. I had what seems to havebeen a unique experience in that I wassurrounded with supportive people at thetime of Sara's birth and diagnosis. Themedical people who dealt with us werevery sensitive; my husband and closefamily were incredibly helpful; our friendswere trying desperately to understandwhat had happened. Yet, through the firstfew weeks I felt isolated . . . almost as if Iwere insulated from the very people whowere trying to reach me the hardest. Inthose first agonizing days, I felt desper-ately that no one, absolutely no one,knew what I was going through"(Mariska, 1984).

42

Parent-to-Parent Support

ance, respite care, and transportation tohealth services. However, an important com-plement to these services is the support thatcan come only from other familiesto-parent support

parent-

"Family and friends fell by the wayside ina fantastic pattern of despair . . . like achain of dominoes. Many of these friendswere professionals that I had the utmostconfidence in. Pillars of strength andguidance drifted away like straws in thewind . . . . I knew then that from that dayforward my whole life must change ifMatthew were to survive. His vulnerabilityfrightened me. I knew what I must do. Icould no longer go it alone. I neededother mothers, other fathers to relate to"(Pizzo, 1983, p. 25).

In one case, the mother was surrounded bysupportive individuals, in the other, themother was abandoned by both friends andprofessionals. In both cases, the parent feltisolated. To combat this sense of isolation,"talking with another person who actuallyunderstands is invaluable" (Mariska, 1984). Itis this power of shared experience thatuniquely characterizes parent-to-parentsupport.

"Parents can share feelings and expe-riences with another parent who hasbeen there, one who can empathize (notmerely sympathize), and one who canvalidate what is being said. In somecases, these support parents, who havebeen total strangers and may have verylittle else in common with the new par-ents, may be even more important for atime than the extended family or friends"(Gould & Moses, 1985, p. 16).

What are the roles that parent-to-parentsupport can play? They are varied. In her bookon organizing and maintaining supportgroups, Minna Nathanson (1986) outlinesthree important functions:

mutual support and friendship;

information gathering and sharing, and

improving the system.

37

Mutual Support and FriendshipThis function creates important social net-

works and provides parents with the oppor-tunity to help others. Much of the emotionalsupport comes from !istening. As HelenFeatherstone aptly observed, "listening issupportive . . . therapeutic insight is part andparcel of the opportunity to hear oneself"(Featherstone, i980, p. 210). The opportunityfor parents to listen and share in a nonjudg-mental atmosphere can lessen the isolationthat many parents experience.

"Many people have discovered thatthey can receive more help and enlight-enment from strangers who have thesame problem than they can from thosecloser to them. . . . Through a . . . mutualhelp experience they are discoveringadditional or alternative ways of copingwith . . . crises in their lives . . . . Mutualhelp provides people with: informationon how to cope with their problems;material help, if necessary; a feeling ofbeing cared about and supported . . . andis very effective because participants findother people 'just like me; they learn thatother people have similar feelings andthat these feelings can be normal in theircircumstances; they are encouraged bythe observation that they too, in turn, canbecome helpers rather than clients" (Sil-verman, 1980).

Information Gathering and Sharing

Parent-to-parent support provides an oppor-tunity to exchange skills gained from invalu-able "on the job training." Information andideas range from identifying babysieers whoare skilled and comfortable in caring for achild with special health needs, to locatingplaces which sell clothes for an infant bomprematurely, to choosing the best health careproviders. A formalized group can enable itsmembers to have access to professionals inthe community who can provide neededtechnical information.

"Because many members of ourgroup have children with geneticallybased problems but may wish to havefurther children, there is a great deal ofinterest in amniocentesis. Although noneof us on our own would have asked ourobstetricians to spend two hours discuss-ing amniocentesis with us, as a group wewere able to ask in an obstetrician whodid spend that much time with us. And inthe group setting we felt secure enoughto ask all the questions we wantedanswers to" (Mariska, 1984).

43

Improving the System

"By identifying and relaying informa-tion on their needs, by fund raising, andby supporting research on their children'sdiseases and conditions and on theireffects on children and families, parentscontribute to the development of psycho-social programs for children and families;to improvements in the medical treat-ment, control and cure of their children'sconditions; and to changes in institu-tiona! and public policies which benefittheir children and families. . . ." (Nathan-son, 1986, p. 5).

As Minna Nathanson illustrates, parent-to-parent support can improve the system in anumber of ways. First and foremost, as con-sumers, parents have an unique and invalu-able perspective on the advantages and dis-advantages of existing programs, gaps inservices, and existing difficulties in accessingand coordinating services. Furthermore, theymay have the most creative and innovativeideas for remedying the deficits in the ser-vices. Because there is "strength in numbers,"the collective expertise of a group of parentscan be a powerful tool to improve the system.

"One parent, alone, can do a lot . . . ifdetermined enough and willing to workhard enough . . . . But that same parentcan do so much more, working withother parents, through an organizationthat is effective, an organization that isnot afraid to use its power" (DesJardin,1971).

Structure end Organization

Parent-to-parent support can take manyforms. While most easily identified as theformal support group that meets at a regularlyscheduled time, parent-to-parent support cantake place in informal ways as well . .. a con-versation in the grocery store check-out line,talking to other parents through a newsletterin rural areas where transportation is difficult,reading a story written by another parent, or anonverbal expression between parents . .. asigh, a nod, a look that says "I've been there."As one parent noted, "Parent-to-parent sup-port is two parents, who aren't married toeach other, talking together" (Poyadue, 1986).

Whatever its form, parent-led andparent/professional-led support groups dodiffer from professional-led groups. Yoak andChesler (1983) have noted that parent-led orparent/professional-led groups are morelikely than professional-led groups to

develop a system of one-to-one parentcontact;

work for changes in the system; and

organize opportunities for socializing.

Many parent-to-parent groups, especiallythose that are organized nationally, have astheir focus a specific condition or disability.These groups have been particularly success-ful advocating for programs, raising funds,and organizing local chapters. Recently, how-ever, there has been an increase in thenumber of groups that are organized acrossdisabilities. In cases where the child's condi-tion is rare or where it may be difficult toidentify a number of children with the sameillness such as in rum./ areas or small com-munities, a parent-to-parent support groupthat is organized across '!inabilities may bethe only option. More importantly, however, isthe fact that families of children with specialneeds have many common concerns. Whenthe emphasis is shifted away from a medicalmodel, from the disease to the family, thecommon issues far outweigh the differences.

Despite the fact that parents of childrenwith special needs consistently testify to theimportance of parent-to-parent support, thistype of support for families has not alwaysbeen adequately encouraged. A considerationof some of the potential barriers to parent-to-parent support may lead to strategies forencouraging further implementation of thiselement of family-centered care.

Barriers and Strategies

Sometimes the problem may lie in parents'difficulties in identifying other parents ontheir own.

". . . it can be a complicated task forfamilies of disabled and at-risk babies tofind their peersparticularly during thefirst few months or years when the futureis a list of unimaginable possibilitiesrather than a clear diagnosis. Nick wasnine months old before I met a motherwhose baby had similar problems. I willnever forget the incredibly intense feelingof recognition and kinship that I expe-rienced during that hour long talk in ahospital cafeteria. And later, as our parentgroup flourished, I saw so many othermothers and fathers experiencing theremarkable sense of connection that hadkept a group of strangers talking in ahospital parking lot until midnight afterour first meeting" (Oster, 1985, p. 32).

44

Parent-to-Parent Support

Financial concerns, the need for respite care,and difficulty in coordinating medical care areas characteristic of a family whose child hascerebral palsy as it is of the family whosechild has cancer.

The notion that the specific diagnosis is notthe overriding concern in the management ofthe child's condition is one of the main ideasbehind what has been called the gencr:c ornoncategorical approach to chronic illness inchildhood (Stein & Jessop, 1982). The "non-categorical" parent-to-parent support groups,together with the more disease specificgroups, all have a role in providing emotional,educational, and programmatic support forparents whose children have special needs.For parent-to-parent support to be most effec-tive, programs must have clear goals andstructure. However, it is important that theyremain flexible enough to address thoseissues specific to a disability as we as thosethat are common to all families.

Professionals can help parents overcomethis barrier by being aware of support groupsin their area and by providing this informationon parent-to-parent support to parents assoon as possible, either at diagnosis or aspart of the discharge plan. How this informa-tion is conveyed, however, is critical.

"If you have a patient who's been tosurgery, and you as a professional, knowthe benefit of having this patient coughafter surgery so that his lungs don't getclogged, you don't go in and suggest tohim that he cough, c- hand him a flyer onthe benefits of coughing and expect himto do it. And here is a parent who has achild. This is the most devastating thingthat can happen to you, and you givethem a flyer. You put one out in the wait-ing area and hope maybe they accidentlyglance at it ?,rd see that there is parentsupport around" (Poyadue, 1986).

While,a start, just giving the name of a sup-port group may not be enough. Often a parentmay not be able, for a variety of reasons, tomake the contact. And yet, as the followingcomment illustrates, they may be just as inneed of this type of support as the family whoactively seeks or organizes a support group.

'Another healing factor was meetingother parents of handicapped children.We did not feel ready for this at first.Sometimes parents who have lived many

39

40

years with this situation pose the samesorts of problems for parents receiving anew diagnosis as do professionalsthelack of synchrony about acceptance Theexperienced parents may be dealing withwhat is, while the new parent has nowish to belong. Nevertheless, when wewere ready, it was good to have contactwith other parents and their children,people who understood us in a specialway. It was encouraging to see peoplewho had survived for a long time; it aidedus in our belief that we could too"(Weyhing, 1983, p. 129).

Often policies designed to protect the rightsand privacy of families may work against theuse of parent-to-parent support. For example,important concerns about breaching confi-dentiality may also result in a reluctance onthe part of professionals to give a parent-to-parent support group the name of a parentwhose child has special health needs. Asnoted earlier, merely giving parents the nameof the group or resources may not be themost effective way to encourage this type ofsupport. The parents may not contact thegroup. They may be overwhelmed with a newdiagnosis or are concentrating on their child'sdischarge. For a variety of reasons, parentsmay not have the physical or emotionalenergy to make the initial call. Nevertheless,these parents may be very interested in receiv-ing, and could benefit from, this type of sup-port. This potential barrier may be overcomeeasily by simply asking the parents' permis-sion to give their names to a parent supportgroup or resource center. That way, the groupcan contact the parents, and when the parentsare ready, that support will be available.

Sometimes professionals and parents seekto mach families on the basis of their child'scondition. While this is helpful when possi-ble, the provision of support should not bedelayed because a "match" is not available.As mentioned, there are many issues that par-ents, whose children's conditions vary, havein common. Sometimes parents may not feelin need of "emotional support" or may notfeel comfortable acknowledging their need.To prevent this from interfering with theiraccessing the other important benefits ofparent-to-parent support, it is important thatprofessionals be knowledgeable about thevariety of roles these support groups can fill.As Florene Poyadue, Executive Director ofParents Helping Parents (PHP), points out,this is why she refers to PHP as a resourcecenter. A parent-to-parent "resource center"can be suggested in a positive way that trulysupports the family rather than conveying theimpression that they are not copingadequately.

45

Another reason that parent-to-parent sup-port may not be encouraged by professionalsis because of territorial struggles. Profession-als who offer support to families may feel incompetition with parent support groups Par-ent-to-parent support should be seen ascomplementing rather than competing withthe type of support and services offered byprofessionals

"Our group does not intend or pre-tend to replace physicians, therapists, orother professionals. We function in thebelief that many of our needs go beyondthe bounds of formal service. What wecan offer each other is uniquely ours,because we all have paid our dues Weall have 'been there,' and we all knowhow it feels to have a child who is wayless than perfect" (Mariska, 1984).

'As parents and professionals we canbest accomplish the difficult job of meet-ing families' needs by utilizing each otheras practical human resources. Parentsdeveloping literature or programs con-taining medical or educational informa-tion must turn to professionals for guid-ance. Professionals developing servicesfor families must draw on the specialexpertise of families" (Oster, 1985, p. 32).

Organizing parent-to-parent supportrequires time and resources. In these days offederal, state, and institutional budget cuts,providing tangible support to parent groupsmay not seem feasible. And yet there ismounting evidence that "judged on the basisof cost effectiveness, family support programsmay be the biggest bargain this country hasever had" (Zigler, 1986).

The professional community can facilitatethe organization and maintenance of parent-to-parent support groups in the followingways:

making referrals to the groups;

providing parents a place to meet;

providing access to a copy machine;

mailing or typing a newsletter;

being available to provide inservice train-ing (at no cost) on a particular profes-sional topic,

facilitating access to important sources ofinformation such as medical records, hos-pital libraries, and research on new treat-ment approaches;

conducting research documenting thebenefits of this type of support;

reimbursing parents for transportation andchild care costs;

providing access to telephones,

having a paid parent position within theinstitution specifically designed to providesupport, information and advocacy; and

having parents stress the importance ofparent-to-parent support through their par-ticipation in educational training programsfor health care professionals.

The following are examples of programsthat provide parent-to-parent support.

Programs

Parents Helping Parents (PHP)

PHP is a non-profit resource center com-posed of parents, professionals, and laycounselors in San Jose, California, whosegoal is to offer support and information tofamilies of children with special needs andto help children with disabilities to receivethe care, services, love, respect, and accep-tance they need to enable them to becomeall they can. PHP is composed of severaldivisions that concentrate on a particulardisability, prcblem, or need; and a large"general" division for all other disabilitiesincluding those undiagnosed. The div-isions include parents of near drowningvictims, parents of children with DownSyndrome, parents whose children havebeen hospitalized in an intensive carenursery, parents suffering a neonatal death,parents of autistic children, and parents ofchildren with learning disabilities. The flex-ibility of the group allows it to address theneeds of these specific groups as well asthe issues common to all. A comprehen-sive array of supportive programs, aninformation packet on available commun-ity resources, and a quarterly newsletterare available for all divisions. Among itsmany activities, PHP offers a Visiting Par-ent Program that provides informationabout special education laws and a siblingprogram that addresses the psychosocialneeds of brothers and sisters of childrenwith special needs.

PHP also provides training programs forprofessionals. Conducted by parents, theseworkshops include information on howprofessionals can improve the psycliuso-cial care of families, communicationstrategies such as better methods for pre-senting the child's diagnosis, and informa-tion on local resources for families. PHPalso provides training for parents inter-ested in becoming peer counselors. Beththe professional workshops and the peercounseling training program involve thejoint participation of parents and profes-sionals. This provides an invaluable oppor-

Parent-to-Parent Support

tunity for increasing parent/professionalunderstanding and collaboration. For moreinformation, contact: Florene Poyadue,PHP, 535 Race Street, Suite 220, San Jose,CA 95126, (408) 288-5010.

Nurse Clinician/Parent ConsultantDuke University Medical Center

An important and innovative approach tooffering parent-to-parent support is foundat Duke Medical Center. Through a grantfrom Ronald McDonald Children's Chari-ties, Beth Stewart is employed as a NurseClinician/Parent Consultant on the Pediat-ric Hematology-Oncology team. In this roleMs. Stewart combines her nursing exper-tise with the knowledge, understanding,and compassion from her experience asthe mother of a child with cancer. As shesays, "I am in a unique position to repre-sent and present both sides, that of ahealth professional and a parent of a childwith cancer."

She provides support to the families inmany ways. One-to-one, she shares theirconcerns and fears about what the diagno-sis of cancer means, how it will affect thechild, and what it means for his/her futureand the rest of the family. She uses hernursing knowledge to assist parents byinterpreting medical terminology, explain-ing treatment protocols, and enabling themto participate more fully in discharge plan-ning. She also provides support by match-ing a trained, experienced Support Parentwith the parent of a newly diagnosed childwithin or near the same community.

Ms. Stewart also educates the medicalteam, hospital staff, and other health pro-fessionals about the needs and concernsof parents. Such opportunities occur for-mally and informally in daily rounds,patient-care conferences, staff meetings,inservice classes, administrative meetings,and in the community setting. The estab-lishment of this position at Duke reflects agrowing trend that recognizes the impor-tance of parent-to-parent support. For moreinformation contact: Beth Stewart, R.N.,M.S.N., Nurse Clinician/Parent Consultant,Department of Pediatrics, Division ofHematology-Oncology, Box 2916, DukeUniversity Medical Center, Durham, NC27710 (919) 684-3401.

Parent ConsultantsRhode Island Hospital

Since 1975, the pediatric oncology unit atRhode Island Hospital has had a parentconsultant position. In 1977 the position

46 41

42

became full time, funded through pediatriconcology. Since 1980, the position hasbeen divided between two parents eachworking half-time.

The parent consultants are fully participat-ing members of the pediatric oncologystaff. They attend staff meetings and haveready access to all other staff membersTheir primary responsibilities are to assurethat the needs of patients and their familiesare identified and met. Their involvementwith a family can extend from the time ofdiagnosis through the entire treatmentperiod and even beyond, depending uponfamily needs and desires. As advocates forthe families and liaisons between the fami-lies and staff, the parent consultantsattempt to make the health care systemmore responsive to the needs of families.Examples of these activities include organ-izing meetings with brothers and sisters,and members of the extended family,arranging for transportation and babysit-ting, providing emotional and psychosocialsupport where appropriate, and helping toresolve difficulties with hospital adminis-trative departments such as billing. Theparent consultants perform administrativeand leadership functions in helping sup-port the local parents' self-help group.They conduct formal and informal teach-ing sessions for various hospital staff andcommunity organizations, as well asrepresent the pediatric oncology service atlocal and national meetings of professionalorganizations.

Parent consultants play a crucial role ineducating families about the functioning ofthe pediatric oncology service, answeringbasic questions about the diseases, andsupporting active parent/professional col-laboration. For more information contact:Joy Benson or Helena G. Richards, RhodeIsland Hospital, Pediatric Oncology Ser-vice, 593 Eddy Street, Providence, RI 02902,(401) 277-5497.

Project HOPE (Helping Other ParentsThrough Empathy)

Project HOPE, a special part of the Family,Infant, and Preschool Program in Morgan-tor, North Carolina, is a parent-to-parentsupport program for families of childrenwith disabling conditions living in ruralcounties of western North Carolina. Due tothe distances between families in the ninecounty area served by Project HOPE, thetelephone is the primary helping serviceutilized.

Project HOPE began in 1981 with a coregroup of 25 volunteer parents. These volun-

47

teer parents offer support to families notonly at the time of diagnosis, but also indealing with concerns and problems thatdevelop as the child matures. With that inmind, attempts are made to match familiesas closely as possible with regard to thespecific disabling conditions of the child,the child's level of functioning, the age ofthe parent, the age of the child, and sim-ilarities in family structure. The trainingprogram for volunteer parents is a majorcomponent of Project HOPE. Parents par-ticipate in approximately sixteen hours oftraining. In addition to providing informa-tion on a range of disabling conditions,training sessions focus on accessingcommunity resources, effective counsel:ngtechniques, and advocacy and networkingskills.

Training materials that facilitate replicationof the program, a 30-minute videocassette,and a paper describing the project areavailable upon request. For more informa-tion, contact: Angela Deal, Coordinator,Project HOPE, Family, Infant and PreschoolProgram, Westem Carolina Center, 300Eno la Road, Morganton, NC 28655, (704)433-2674. Parents interested in HOPE ser-vices can call the HOPEline collect at(704) 433-2684 from 8:00 a.m. to 5:00 p.m.Monday through Friday.

Support Programs for Other Family Members

Sibling Information Network

The Sibling Information Network wasformed to support brothers and sisters aswell as to assist professionals, researchers,and parents caring for persons with dis-abilities. The major product of the Networkis the Network Newsletter. Published quar-terly, the newsletter is an extremely infor-mative resource covering such topics asavailable literature/media for brothers andsisters, letters from family members seek-ing to contact others related to a child withspecial needs, and current research andjournal articles. Those interested in receiv-ing the newsletter may do so by sending$5.00 to: Sibling Information Network,School of Education, Department of Educa-tional Psychology, U-64, The University ofConnecticut, Storrs, cr 06268.

Helping Grandparent Program

Sponsored by the King County Advocatesfor Retarded Citizens (ARC) and the Uni-versity of Washington's SEFAM (Support;ngExtended Family Members) Program, thisprogram provides a core of trained "help-ing grandparents" who offer mutual sup-

port to grandparents of newly diagnosedgrandchildren. The volunteers receivetraining in interpersonal communicationskills, available community resources, andreferral procedures.

During a series of six Grandparent Work-shops, grandparents meet as a group witha professional team to share their concernsand to learn about their grandchild'sneeds. The workshops offer grandparentsopportunities to discuss the impact of thechild's disability on the entire family and toobtain up-to-date information about thechild's special problems and needs. Mostimportant, grandparents have a chance tomeet other special grandparents who sharetheir concerns.

Their quarterly newsletter entitled Espe-cially Grandparents is written by and forgrandparents of children with developmen-tal disabilities. Additional training manualsand curricula are also being developed toenable other organizations to develop pro-grams to meet the needs of grandparents.All of the programs are free. For moreirformation or to receive the newslettercontact Elaine Schab-Bragg at the KingCounty ARC, 2230 8th Avenue, Seattle, WA98121, (206) 622-9292.

Other Support Groups

There are numerous groups that areorganized around a specific disability.Local chapters can be identified by con-tacting the national organizations. Most of

48

Parent-to-Parent Support

the major national organizations are identi-fied in the following publication:

Reaching Out available from: NationalCenter for Education in Maternal and ChildHealth, 3520 Prospect Street, N.W.,Washington, DC 20057, (202) 625-8400.

There are also a growing number ofnational organizations that are organizedacross disability at the national or regionallevel. Some of these are:

ACCH Parent NetworkAssociation for the Care of Children's Health3615 Wisconsin Avenue, N.W.Washington, D.C. 20016(202) 244-1801

The Federation for Children withSpecial Needs

312 Stuart StreetBoston, MA 02116(617) 482-2915

Pilot Parents2005 North Central, Suite 100Phoenix, AZ 85004(602) 271-4012 or (602) 969-8209

SKIPSick Kids (Need) Involved People216 Newport DriveSeverna Park, MD 21146(301) 261-2602

Alliance of Genetic Support Groups38th & R Streets, N.W.Washington, DC 20057(202) 625-7853

43

Ill

Q Assurance that the Design of Health CareDelivery Systems is Flexible, Accessible,and Res nsive to Family Needs

49

INTRODUCTION If anything can be anticipated in the life ofa child with a chronic illness or disablingcondition, it is that the child and his or herfamily will have a variety of needs thatrequire a myriad of services; that they will

WHAT DOESTHIS MEAN?

FledbilityLack of "consumer input," turf issues

between agencies and processionals, finan-cial and staff cutbacks, and complicated anddiffering agency eligibility criteria are a fewof the factors that may diminish the flexibil-ity of programs. In a family-centeredapproach to care, programs must bedesigned with the individuality of families inmind, and with the flexibility to tailor ser-vices to each child's and family's uniquestrengths and needs. Clearly an agency, insti-tution, or program that offers a variety of ser-vices and uses these options flexibly will bemore able to support children and familiesthan one that determines programmingbased on agency concerns and availabilityalone rather than the child's and family'spriorities.

"We need to look at new approachesto families. We need to recognize theresilience of the American family, eventhough it may be different than ours, andwe need to realize that we are not goingto be able to have one approach or oneprogram or one set of parents' meetingsor one manual that fits every parent"(Vincent, 1985, p. 35).

Even when the program offers a variety ofservices, the manner in which it is deter-mined if a child or family can qualify forthese services must be flexible as well. Ser-vices tied to narrow diagnostic categoriesmay penalize those children whose complexconditions either overlap several diseasecategories or fall between them, and mayprevent families from obtaining neededservices.

Sometimes this issue of flexibilitybecomes a point of contention between par-ents and professionals. From the parents'perspective, they aren't asking professionalsto do anything more than they do everydayin having to respond to their child's changing needs. For professionals, however,achieving this flexibility may be very difficult.Professionals may be caught between

50

Flexible Health Care Delivery Systems

interact with hundreds of professionals; andthat their needs will change over time Inorder to serve these children appropriately,the health care system must be flexible,accessible, and responsive to family needs.

responding to the needs of families andfinancial cutbacks or program requirementsover which they have little control. Onlythrough increased collaboration among par-ents, professionals, and policy makers caneach begin to understand the other's per-spective, and with that knowledge, begin towork effectively for the design of more flexi-ble programs and policies.

Accessibility

In addition to flexibility, a family-centeredapproach to care encourages programs to beaccessible.

"It is remarkably difficult for parentsto locate the services that do exist. Thestate funds some programs, while coun-ties and towns sponsor others. A thirdgroup owe their existence to privatephilanthropic organizations, to churchgroups or to hospitals. No one seems toknow exactly what is available for whomunder what circumstances" (Feather-stone, 1980, p. 184).

As was noted in the Vanderbilt UniversityInstitute of Public Policy landmark study ofchildren with chronic illnesses in America,"diversity and fragmentation characterize theorganization of services for chronically illchildren" (treys, Moynihan, Perrin, & Shayne,1983, p. 11). This applies not only to special-ized medical and surgical services but alsoto educational, psychosocial, and commun-ity support services.

"Because Jody had turned seven Ineeded to find a new school for him.The head of his current program gaveme two possible names and suggested Icall the special education department inmy town for further suggestions. Thepreschool coordinator there gave metwo more names, while pointing out that1 should actually be talking to anotherwoman in an office across town. When Icalled this lady she offered two sugges-

45

tions cf her own. I noted with interestthat my three lists did not overlap at anypoint" (Featherstone, 1980, p. 184).

Many of the same factors that impede thedevelopment of flexible programs, affect thedegree to which programs are accessible.However, the combined experience of bothparents and professionals can be very pro-ductive in rely 'eating or expanding hospitalservices to community settings, in clarifyingeligibility criteria, and in educating serviceproviders and parents about availableservices.

Responsiveness

Family-centered care involves the designof services that are responsive to the priori-ties of the child and the family. Beingresponsive may involve arranging for follow-up services to be provided at a facility in thechild's community rather than at a tertiarycare center, including comprehensive psycho-social and educational services in the careplan, or coordinating scheduledappointments.

"Especially for children with multiplehandicaps, arranging to be Mondaymorning in the cardiology clinic, Tues-day afternoon in the neurology clinic,and on Thursdays in the orthopedist'soffice becomes itself a major manage-ment problem" (Treys, et al., 1983, p.11).

46

What are the ways in which programs canbe more flexible, accessible, and responsiveto the needs of the children and their fami-lies? Recognizing where the organization ofservices runs counter to the goals of thechild and family is a start. This point isthoughtfully addressed by Kohrman andDiamond in a 1986 article. The authors sug-gest a need for a reorientation of valueswhich include:

growth in community- and home-basedapproaches to care;

greater coordination and management ofcare between professionals and betweenagencies; and

a shift from specialty-centeredapproaches to "noncategorical"approaches centered around the func-tional capabilities of children.

This type of situation forces the parent toeither cancel a much needed appointmentfor their child, lose multiple days ofemployment placing further financial stresson the family, or attempt to coordinate theappointments themselvessomething evenprofessionals or agencies may not be able todo as the following story illustrates.

"Agency A may recommend agenetic evaluation . . . by Agency H,which is in another town Agency Amay fail to coordinate the appointment(seeing that as the family's responsibil-ity), fail to arrange for defraying the cost(Agency C has the money for such eval-uations), fail to understand the implica-tions of travel for the family (Agency Dis responsible for travel expenses whileAgency E is the only group that can pro-vide respite care for the family's otherchildren), and fail to share the resultinginformation with other agencies (sinceAgency B did the evaluation, its B'sresponsibility). What seemed like asimple, reasonable recommendationfrom A's point of view can become anenormous undertaking for the family if Adoes not follow through" (Duffy, 1984).

By making systems of care more flexibleand accessible and most importantly by ask-ing families more directly what types of ser-vices they want, programs and policies willbe more responsive.

The following are examples of approachesto program development and technicalassistance that reflect this needed shift.

Program DevelopmentOne way to ensure that a program is

responsive to the families it serves is to askthem directly about their priorities for ser-vices. The following are examples of pro-grams that have sought consumer input.

Children's Home Health Netwrk

Funded through the Division of Maternaland Child Health, the purpose of the net-work is to develop models of dischargeplanning for ventilator-dependent chil-dren in Illinois. In order to gain a betterunderstanding of the health care and

support needs, stress experienced, andmethods of coping used by these childrenand families, project personnel are inter-viewing children, parents, siblings, respi-ratory therapists, equipment vendors,insurance companies, nursing agencies,in-home nurses, and public aid agencies.At present, 35 families caring for theirchildren who are dependent on ventila-tors at home are participating in the pro-gram. The data from the project will beused to improve the quality of servicesprovided to families, and to address ser-vice gaps, the discharge planning pro-cess, and family support needs. For moreinformation contact: Kathleen Murphy,MSW, CSW, Children's Home Health Net-work, Division of Services for CrippledChildren, 1919 W. Taylor Street, Chicago,IL 60612 (312) 966-6380.

Project Serve

In 1983, three agencies, the Division ofFamily Health Services within the Massa-chusetts Department of Public Health, theDevelopmental Evaluation Clinic withinBoston Children's Hospital, and theDepartment of Maternal and Child Healthwithin the Harvard School of PublicHealth, joined in this public/private col-laboration. The purpose of the projectwas to improve the statewide publichealth service programs for children witha chronic illness or disability. Ninehundred ten parents of children with spe-cial needs along with hundreds -f stateagency personnel, direct service provid-ers, other state programs, and providers ofhealth care coverage were surveyed inorder to document existing services forchildren with special needs with the goalof developing recommendations for thereorganization of services and servicedelivery system

The parent survey was developed with thehelp of parents from various parent organ-izations and a paid parent consultantfrom the Federation for Children withSpecial Needs. While some of the parents'answers did vary depending on the condi-tion of their child, in many cases therewere no differences among familieswhose children varied in their particulardisability or health condition. Included inthe survey were questions about theimportance of services, the availability ofservices, insurance coverage and out-of-pocket expenses.

The services that were ranked as mostimportant by the parents included: parenteducation on rights and entitlements and

Flexible Health Care Delivery Systems

training for child's health needs; help ingetting needed services including parentsupport, specific therapeutic services,and early intervention; financial help;information on community resources;social/recreational opportunities; andtransportation to medical services.Regarding the availability of services,parents reported the following as leastavailable: support groups for siblings;work opportunities for their child; help inmaking physical house changes; financialhelp; day care; transportation to medicalservices; information on communityresources; and social/recreationalopportunities.

Regarding insurance coverage and out-of-pocket expenses, only four percent of theparents reported having no public or pri-vate insurance of any type. Yet only 48percent said they felt confident that theirchild had and would have adequatehealth insurance now and in the future.Services for which the parents reportedout-of-pocket expenses included: travel,parking fees, drugs and medications, billsafter insurance payments, physiciancharges, lost wages due to child's hospi-talization or medical visits, specialequipment, and babysitters for otherchildren.

The results of the parent survey alongwith the responses of the professionalsinterviewed led to the following conclu-sions and recommendations:

a need to recognize and support thesignificant role of families in the deliv-ery of care;

a need for increased coordination inservice planning, program develop-ment, and provider communication;

a need for additional support servicesfor families and expanded services forchildren;

a need for improved interagency coor-dination; and

a need for additional protection forfamilies in their ability to secure andmaintain affordable health insurance.

For more information or a copy of thereport contact: Project Serve, 101 Tre-mont Street, Room 615, Boston, MA02108, (617) 574-9493.

52 47

Technical AssistanceProject NEXUS

Project NEXUS (which means to link orconnect) is developing a technical assist-ance manual to assist individuals indeveloping a coordinated and responsivesystem of care for children with specialneeds and their families. Funded by theNational Institute of HandicappedResearch with the Department of SpecialEducation and the Bureau of Child Devel-opment at the University of Kansas, theproject is based on the premise thatagencies must be coordinated in such away so the family does not have to func-tion as a "switchboard operator" trying tolink a multitude of unconnected agencies.The manual suggests ways to involve across section of the community in plan-ning that go beyond the typical inter-agency collaboration. Families as well ascitizens-at-large are involved in the devel-opment of interagency agreements, thereduction of fragmentation of services,and the identification of gaps in serviceavailability. The participation of parents ofchildren with special needs helps serviceproviders keep family issues in the fore-front. The citizens-at-large bring a freshapproach to service delivery and may beable to raise the awareness of the totalcommunity as to the services needed.Together, they can assist service providersin developing systems of care that meetthe priorities of families. For more infor-mation contact: Robin Hazel, ProjectNEXUS, Kansas University Affiliated Facil-ity, 377 Haworth Hall, University of Kan-sas, Lawrence, KS 66045, (913) 864-4954

Network Project

The Center for Networking Community-Based Services is based at the George-town University Child Development Cen-ter (GUCDC). Throw .,..) the Network,GUCDC provides technical assistance andtraining to states to enhance interagencycollaboration and to improve services tochildren with chronic illnesses or severeemotional disturbance and their families.The Network consists of leaders in health,mental health, and education in over 35states, as well as a national level taskforce with representation from key federalagencies and departments in each ofthese areas. The Network also includesthe CASSP (Children and Adolescent Ser-

48

vice System Program) Technical Assis-tance Center, a special NIMH initiativefocusing on children with severe emo-tional problems in 24 states. For moreinformation contact: Phyllis Magrab,Ph.D., Georgetown University, 3800 Reser-voir Road, N.W., Washington, D C. 20007,(202) 625-7033

Programs

Home-Based Support Services for Chroni-cally III Children and Their Families

The New York state health departmenthas received funds from the Division ofMaternal and Child Health to developcommunity-based services for childrenwith chronic health conditions and theirfamilies in New York City through a net-work of respite care providers. Programcomponents include home-based care,community cooperatives, training curric-ula, program evaluation, and the devel-opment of self-help support groups. Formore information contact Barry Sherman,Ph.D., New York State Department ofHealth, Tower Building, Empire StatePlaza, Albany, NY 12237.

Coordination of Care for Chronically IllChildren Program

This project, funded by the Division ofMaternal and Child Health, brings togethera wide range of services for children withspecial needs and their families throughfour regionally-based demonstration sitesin New York State. For more informationcontact Thomas Nattell, M S.W., New YorkState Department of Health, Tower Build-ing, Empire State Plaza, Albany, NY 12337.

The Child and Family Support Project

The project, at Children's Hospital MedicalCenter in Seattle, Washington, is a pedi-atric hospital discharge program forchildren dependent on ventilators andtheir families. Flexibility, accessibility,and responsiveness are encouragedthrough parent/professional collabora-tion (e.g., Parent Advisory Board, familysupport groups) at all phases of the pro-ject. For more information, contact RobinThomas, R.N., Ph.D., Children's HospitalMedical Center, 4800 Sand Point Way,Seattle, WA 98105.

An important resource for the implementa-tion of a family-centered approach to care isresearch. Research studies that furtherdefine family-centered care or that examineits effectiveness can be very influential inincreasing an overall awareness of thisapproach and in establishing programs andpolicies that exemplify this philosophy ofcare.

Research InvestigationsAn important factor in providing care that

is truly family-centered is a better under-standing of the daily experiences of childrenwith special needs and their families and thesupport services that would be most desir-able to them. Not only is this topic of greatimportance but the manner in which thisinformation is obtained is equally important.

"The best way to find out about thespecial concerns of families with achronically ill or disabled child is to askparents themselves" (Horner, Rawlins &Giles, 1986, p. 40).

The critical importance of how one asks,and how one interprets the information, isreflected in the following studies.

In 1981, Wikler, Wasow, and Hatfield con-ducted a study examining "chronic sorrow"experienced by parents of children withmental retardation. As part of the study, par-ents were asked whether raising a child withdevelopmental disabilities had made themstronger or had resulted in negative conse-quences. While most parents reported feel-ings of sadness, they also indicated they hadbecome much stronger people because oftheir experiences. Unfortunately, the authorschose not to report these more positive find-ings. Because 0`e results so contradictedtheir prior assuinptions about parents ofchildren with special needs, they thoughtthese findings were not valid but rather aresult of methodological problems in thestudy.

In a courageous second article publishedin 1983 the authors "now consider this initialdismissal to be another example of a perva-sive stance adopted among professionals, in

Because the family-centered care move-ment is in its infancy, the number ofresearch investigations in this area is some-what limited. What follows is a brief reviewof selected studies that focus on family-centered care and related issues along withsuggested areas for additional investigation.

which problems instead of strength andinstances of coping are concentrated on indealing with families of developmentallydisabled children" (Wikler, Wasow, & Hat-field, 1983, p. 313). The authors go on toreport the original results which reflect amore balanced view, identifying not onlystresses experienced by these families butalso their strengths anu coping strategies.The authors also offer several recommenda-tions which will be helpful to others inresearching the experiences of children withspecial needs and their families. For moreinformation see American Journal ofOrthopsychiatry, 1981, 51, 63-70 and SocialWork, 1983, 28(4), 313-315.

The following studies reflect anotherinnovative approach to gaining a betterunderstanding of the strengths and serviceneeds of these children and families.

In a study designed to have families teachhealth care providers about their experi-ences with their children who are dependenton ventilators, Thomas (1986b) of Children'sHospital Medical Center, Seattle, Washington,used both structured data and quantitativeanalyses to examine the in-depth informa-tion gathered during a one-week periodwhere Dr. Thomas lived with families ofchildren dependent on ventilators during aSKIP (Sick Kids [Need] Involved People)sponsored Family Learning Retreat Camp inMiami, Florida Although a small sample, theinformation gained from these parents wasvety similar to the comments obtained dur-ing an earlier study with seven families t.vithchildren on ventilators (Thomas, 1986a).According to Dr. Thomas, the families inboth studies "developed an impressiveability to cope with their exceedingly stress-ful experiences . . . they demonstrated a

5 ei 49

50

remarkable adaptation, a balance in living."Another finding common to both studies isthat the families identified the struggle forcontrol between families and health careproviders as a consistent major strain intheir lives. This struggle for control was evi-dent not only in relationship to the child'scare but with regard to the families' lifestyleas well. Part of this struggle may very well bedue to the fact that both parents and profes-sionals may not be accustomed to the newroles each must assume now that thesechildren with chronic health impairmentsare living longer. For more information con-tact, Robin Thomas, R.N., Ph.D., Children'sHospital Medical Center, 4800 Sand PointWay, Seattle, WA 98105.

The next investigation provides anotherillustration of how a research study canserve as a valuable needs assessment.Homer, Rawlins, and Giles (1986) surveyedparents of children with chronic healthimpairments in Kansas to determine theirneeds. The authors mailed a questionnaireto a sample of 493 families whose nameswere obtained through State Services forChildren with Special Health Needs, localHead Start programs, and local parent sup-port groups. Of these, 164 were returned.These families identified a number of needsincluding: help with medical bills, recreationfor the child, appropriate educational oppor-tunities, child care, more information ontheir child's condition and support services,family counseling, parent-toparent support,training in hots.- therapy techniques, in-home nursing, and out-of-home placement.While the authors specifically discussedhow these needs could be addressed bynursing personnel, their conclusions can bevery helpful in identifying ways that otherprofessionals and agencies can better sup-port families and their children with specialneeds. For more information see M. M.Homer, P. Rawlins, and K. Giles (1987),American Journal of Maternal/Child Nursing,12(1), 40-43.

Other research investigations have sup-ported family-centered care by documentinga need for support/community services andas a result may influence the establishmentor expansion of services. This function isillustrated in the Project Serve Study con-ducted in Massachusetts that was describedearlier as well as in the School-Age ChildCare Project of the Wellesley College Centerfor Research on Women. This one yearstudy, begun in September, 1986, will exa-mine after-school care programs for childrenwith special needs ages 5 to 16. The Proj-ect's past research suggests that very fewcommunities have considered children with

r 0

special needs in designing before-and-after-sc ool programs. While some have sug-gested that "latchkey" ch.:dren may learnvaluable self-care and "survival" skills, thereis little debate that children with physicaldisabilities, emotional problems, or otherdisabling conditions need appropriatesupervision. This stu, .vill assess thedegree to which these needed services arenow available and will identify model pro-grams demonstrating creative and effectiveapproaches which can be replicated. Thefindings will be disseminated at professionalconferences and it a booklet entitled,"School Age Children with Special Needs:What Do They Do When School's Out?" Formore information or to advise the project ofan innovative program serving children withspecial needs contact: Dale B. Fink, Director,School-Age/Special Needs Study, Center forResearch on Women, Wellesley College,Wellesley, MA 02181, (617) 23S ")320, extension 2542.

Once the need for family-centered servicesis identified, and in those cases where theyare then provided, it is important to examinethe effectiveness of such programs. Thereare a number of studies that provide solidevidence that the degree and quality ofsocial support affects such variables as fam-ily functioning (Bronfenbrenner, 1977), childdevelopment (Cochran & Brassard, 1979),and the secrrity of infant-mother attachment(Crockenberg, 1981). It is not surprising thatsimilar relationships would be identifiedamong parents whose children have specialneeds. Iscoe and Bordelon (1985) examinedthe benefits of a parent-to-parent supportprogram organized across disabilities. Thestudy was based on questionnaires and per-sonal interviews completed by new parentsof children with varying disabilities, expe-rienced parents, and program directors andstaff in 13 Pilot Parent Programs in the U.S.and Canada. Among the many findings werethat most new parents were very satisfiedwith the support. The experience was just aspositive for the 20 experienced parents. Thebenefits included, "giving hope ... sharinginformation and experiences . . . helpingnew parents avoid frustrations." The profes-sionals and parents agreed that the programwas "an addition to, rather than a replace-ment or circumvention of, medical, thera-peutic, or social service intervention." Withvery little money (no yearly budget exceeded$35,000) and minimal salaried staff, the pro-grams provided the "one thing that isbeyond the ability of professionals in anyfield: another parent who understands"(p. 107). For more information see L Iscoeand K. Bordelon (1985), Children's HealthCam, 14(2), 103-109.

In another study, Pless and Satterwhite(1972) evaluated the benefits of a parent-to-parent support program for famii;es of chil-dren with special needs. A total of six coun-selors participated, four of whom had one ormore children with a chronic illness them-selves. Each counselor was responsible foreight families and worked an average of tenhours per week. They received an annualstipend of $1,000 plus travel expenses (46percent of their time was spend in home vis-its). At the end of the year the success of theprogram was evaluated.

Significantly more of the children whosefamilies received support improved their"psychological status" in comparison tothose who did not receive the support. (Theauthors did not delineate what specific"psychological" variables were studied). Theparents receiving the support also rated theprogram so positively that 84 percent indi-cated that they would be willing to pay forthe service. (The average amount offeredwas $60 per year).

The total cost of the project, including thecounselors' stipends, travel costs, and admi-nistrative costs averaged $15.50 per monthfor each family. If all families had paid $60per year (the average amount offered), thecost to the institution would have been only$126 per family for the entire year. Even ifprofessionals could have provided the samesupport and resources as the parent counse-lors, the cost for the parent counselorswould be considerably less that the equiva-lent amount of staff time. For more informa-tion see T. B. Pless and B. Satterwhite(1972), Clinical Pediatrics, 11(7), 403-410.

The importance of information to parentsof children with special needs was dis-cussed earlier. In an answer to this need forinformation, the PACER (Parent AdvocacyCoalition for Educational Rights) Center wasbegun in 1976 as the parent training programof a coalition of eighteen disability organiza-tions concerned about the education ofchildren with disabling conditions and theirfamilies. Members of the PACER Coalitionrecognized that if parents of children withspecial needs were to fulfill roles providedin P.L 94-142, they would need systematicinformation about the major provisions ofthe special education laws. To examine theeffectiveness of this education programPACER conducted a major evaluation studywith funds from the Department of Educa-tion. Parents reported increasing not onlytheir knowledge of their rights and responsi-bilities in the care of their children, but alsotheir confidence. They also reported adecreased sense of isolation and increasedinteraction and sharing of knowledge with

56

Research

other parents. For further information aboutthis study or to receive a copy of the evalua-tion report, contact PACER, 4826 ChicagoAvenue, South, Minneapolis, MN 55417,(612) 827-2966.

The option of caring for children withspecial health needs at home is one way inwhich a family-centered approach to carehas been implemented. Both parental satis-faction and the cost effectiveness of this caremust be investigated in order to improve andto promote this option for children andfamilies.

In a study reported by Stein and Jessop(1984), the effectiveness of pediatric homecare was examined. The study was con-ducted over a one and a half year period.Two hundred nineteen children with variouschronic conditions participated. Childrenwere randomly assigned either to the Pediat-ric Home Care (PHC) program at the AlbertEinstein College of MedicineBronx Munic-ipal Hospital Center or to the traditionalhospital-based program. The PHC program isbased on the assumption that care must:

1) address issues of concern to familiesof children with chronic conditionsthat cross disease categories;

2) be oriented to the health of the childwhile focusing on the whole familyand its needs;

3) foster the independence and maximizerehabilitation and adjustment of thechild and family; and

4) actively in-olve the family in the man-agement and decision-making process.

Services are provided in the child's homeby an interdisciplinary team that includesthe child's family. The results of the studyindicated that pediatric home care was effec-tive in improving the satisfaction of the fam-ily with the care provided, in improving thechild's psychological adjustment, and inreducing maternal anxiety, depression, angertoward the child, somatization, and poten-tially abusive parent-child interactions. Formore information see R. Stein and D. J. Jes-sop (1984), Pediatrics, 73(6), 845-853.

The specific issue of the cost effectivenessof home care for 18 children dependent onventilators in Illinois was examined byGoldberg and associates in 1984. From thefindings, the authors conclude that the initialreduction in health care costs associatedwith transfer to home was 70 percent ormore. This fact, in addition to the "unantici-pated improvement in medical conditionsand psychosocial development" of the child,supports this type of approach to care for

51

52

certain children. For more information see A.I. Goldberg, E. A. M. Faure, C. J. Vaughn, R.Snarski, and F. L Seleny (1984), Journal ofPediatrics, 104(5), 785-795.

In order to provide home care and otherfamily-centered care services, it may benecessary to develop innovative and creativeapproaches to financing these services. TheHealth Sciences Research Institute (HSRI) inMassachusetts has a three year grant to iden-tify exemplary models for designing andfinancing home care for children with severedisabilities and chronic illnesses. The goalof this project is to define flexible, yet effec-tive mechanisms to support and to sustainfamily care for thr children as follows.

to identify the costs of providing homecare and the factors which contributeto these costs;

to develop altemative models forfinancing home care; and

to evaluate the effectiveness and feasi-bility of alternative financing modelsfollowing implementation at demon-stration sites.

The project will review the available litera-ture on home care; interview families caringfor children at home; solicit opinions ofhealth care experts; and identify thcse vari-ables that are critical to financing the costsassociated with providing home care forchildren with different chronic illnesses anddisabilities. HSRI will develop a network ofrepresentatives from national organizationsserving families and children with severedisabilities and chronic illnesses. Two to fiverepresentatives will be selected from eachstate depending on the size of the state andavailable organizations. For additionalinformation about this project contact:Governmental Activities, United CerebralPalsy Associations, 1522 K Street, NW., Suite1112, Washington, D.C. 20005, (202) 842-1266 or Valerie Bradley, President, HumanServices Research Institute, 2336 Massachu-setts Avenue, Cambridge, MA 02140, (617)876-0426.

Areas in Need of FurtherInvestigation

Not only is additional research examiningfamily-centered care needed, but greaterattention needs to be directed toward con-ducting research in a "family-centered" way.An excellent resource that can assist indi-viduals in conducting research is an articleby Turnbull, Blue-Banning, Behr, and Kemsat the University of Kansas. This article,entitled "Family Research and Intervention:A Value and Ethical Examination" (unpub-

r ),I1t)

lished manuscript available from the Univer-sity of Kansas) highlights some of the nega-tive bias that exists in current research aboutfamilies. 1 ne authors note that there seemsto be a lack of attention to the positiveattributes and contributions of children withspecial needs, a point well illustrated by theWikler et al. (1981, 1983) articles. Theauthors suggest alternative philosophicalapproaches along with two major recom-mendations for conducting research.

"First, we challenge . . . researchersconducting family research to formpartnerships with families and organiza-tions representing their interests. . . . Bymutual prodding of each other's think-ing, academicians and parents can en-able research to have its best chance tofulfill the promise. Second, we recom-mend increasing the emphasis in gradu-ate education programs on the philos-ophy of science. Focusing on how to doresearch is necessary but not sufficient.It is equally important to know why todo research, to know what questions areimportant to ask, and what to do withthe results of the research" (Turnbull etal., p. 10).

In the same article, the authors recap thetypes of questions families of children withspecial needs would like to see researched.

How can the first encounter betweenparents and professionals beimproved?

What are potential successes we canhave with our children?

How have other families coped well?

What makes the difference betweensuccessful and unsuccessful families?

What is the economic impact of dis-ability on the family and how canmoney be spent proportionally?

How can one get employment withoutlosing government benefits?

Hoy/ can persons with disabilitiesdevelop relationships with persons ofthe opposite sex? (Turnbull et al.,P. 9)

Other areas in need of further researchinclude the following.

Additional studies are needed that pro-vide a greater understanding of thestrengths as well as the needs of childrenwith chronic illnesses and disabilities andtheir families. This approach to researchc i be facilitated by reviewing the avail-,,Jle literature (e.g., Crnic, Friedrich, &

Greenberg, 1983; Longo & Bond, 1984;Sherman & Cocozza, 1984) to learn moreabout the range of responses and copingstrategies.

Similar to Dr. Thomas' research, addi-tional investigations are needed that takea more comprehensive approach toresearch rather than an examination of asmall slice in the lives of these childrenand their families. Longitudinal studieswould be very helpful in identifying thechanging needs of children and familiesand in reflecting the pivotal role that par-ents play in the lives of their children.This information will greatly enable pro-gram developers and policy makers todesign services that are more responsiveto the needs of families.

Research

Research can play a powerful role inidentifying needed services. Additionalstudies that ask parents directly abouttheir service needs, their goals for theirchild, and the most effective ways ofdelivering them as well as studies thatexamine the availability of these servicesare needed.

Once needs are identified and servicesprovided, the effectiveness of family-centered care services, in terms of sup-port as well as cost effectiveness, needsto be examined along with innovativemechanisms for financing this care. Thisresearch can be very instrumental inestablishing and maintaining qualityfamily-centered care.

53

III II III

A Checklist for Effective Parent/Professional Collaboration

ElAre there formal and informal mechanisms for ensuring effectiveparent/professional collaboration at all levels of care?

Collaborative meetings scheduled at convenient times forfamilies?

Reimbursement for parent's time, services, transportation, andchild care expenses?

Formal and informal ways to encourage parent participationduring meetings?

ElAre parents attending collaborative committees representative of a va-riety of cultural, economic, educational, and geographic backgrounds?

ElDo the parents participating in collaborative meetings include thosewhose children have been newly diagnosed, those who are expe-rienced in identifying services, and those representing parentorganizations?

I: Are collaborative meetings composed of equal numbers of parents andprofessionals?

ElAre there mechanisms for including parents along with professionalsin inservice programs to build skills necessary for this collaboration onan ongoing basis?

ElAre there mechanisms for preservice and inservice training for profes-sionals in working collaboratively with parents?

Are there effective mechanisms for receiving information from parentsand parent groups and for disseminating information to them?

GO55

A Checklist for States

E] Does the health department have a written philosophy of care that clearlyreflects the pivotal role of parents?

IDDo parents participate collaboratively with professionals at all levels ofdecision making and policy formation within the state?

DIIs there a statewide coalition of p-irents and parent support groups acrossdisabilities?

DI Are there effective mechanisms for receiving information from parents andparent groups and for disseminating information to them?

ElIs there an up-to-date statewide information and referral system that is eas-ily accessible to parents and professionals?

EIDo parents have complete and ready access to theii- children's records?

ElAre there effective mechanisms for coordinating services for individualfamilies?

ElIs there a single individual who can assist the family in coordinating thecare plans?

IDAre there mechanisms within the state's funding system that support thefamily's efforts to care for their child at home?

ElAre services organized in ways that allow for flexibility to address thechanging and varied needs of children and families?

56

A Checklist for Communities

0 Are there services ava.table that support fam;ies as they care for theirchildren with special health needs?

0 Parent-to-parent support programs and networks

Parent education programs

Sibling support programs

Family resource libraries or parent information centers

0 In-home health care services

0 Care coordination services

Equipment loan or exchange programs

0 Transitional care facilities

0 Hospice care

0 Respite care programs

0 Mental health services

0 Transportation assistance

0 Financial planning assistance

0 Day care and babysitting services

0 Recreational programs and camps

0 Toy lending libraries

6 2

57

Are there mechanisms for addressing the educational needs of childrenwith special health needs and their families?

El Early intervention programs

El Special education from the time of diagnosis until 21 years of age

El Transitional vocational rehabilitation programs

El Hospital school programs and home tutoring, particularly for child-ren with frequent hospitalizations and/or long term healthproblems

El Community libraries containing resources on developmental dis-abilities and chronic conditions and available services

El Parent Training and Information Centers or other formal or informalnetworks for parents about educational issues

EiAre available community services flexible, accessible, and responsive tothe strengths and needs of children and families?

El Mechanisms to ensure effective communication and continuity ofcare among home, hospital, primary care settings, school, andcommunity

El Regionally coordinated planning among community-based servi-ces, local hospitals, and tertiary care centers

El Easily accessible buildings

El Information on community health care and support services avail-able through the media, in clinic and physicians' offices, schools,and libraries

El Inservice training involving parents to educate community serviceproviders about the strengths and needs of children and the pivotalrole played by their families

6358

pas

A Checklist for Professional Training Programs

11 Are there opportunities for professionals to learn directly from parentsabout their perspectives and support needs?

ElDo parents participate in the development of training programs forprofessionals?

ElDo preservice and inservice training programs provide instruction in thefollowing areas?

El Effective communication skills and methods for working collabora-tively with families

ID Skills in working collaboratively as a team member with profes-sionals of other disciplines

El Service delivery models that provide a mechanism for coordinatingcare among agencies in the community and for developing linkagesto and from primary, secondary, and tertiary care settings

ID Planning care in the home and community

ID Financing options for famine:.

El Normal and atypical child development

ID Support needs of families

El Family dynamics

El Effectiveness of parent-to-parent support

El Advocating for comprehensive community resources

p Research methodology examining the cost and emotional effec-tiveness of family-centered care policies and programs

ID Techniques for conducting research in a way that respects therights of the children and families and reflects a balancedapproach, focusing on family strengths as well as needs

64 59

IIII

A Checklist for Hospitals

60

0 Does the hospital have a written philosophy or standards of care thatclearly reflect the pivotal role of parents?

El Are there mechanisms for facilitating parent/professional collaboration inthe design and implementation of hospital policies and programs?

0 Is there a Parent Advisory Committee which reports to the Board ofDirectors?

0 Are there established policies that encourage parent participation in oillhealth care?

fl 24-hour open visiting for parents

fl Rooming-in facilities

fl Liberal sibling visiting

0 Presence of parents during anesthesia induction, a stay in the re-covery room, radiology examination, and emergency room treatment

0 Does the hospital provide programs and staff that support the develop-mental and emotional needs of children and families?

fl Preadmission preparation program

0 Preparation for patients and parents during and after medical andsurgical procedures

fl Professionally staffed child life programs and appropriatelyequipped playrooms

fl Hospital school program

fl Family Resource Library

fl Readily available parent-to-parent support

fl Primary care nursing particularly for young children in need ofconsistent caregivers

fl Support staff such as paid parent consultants, patient representa-tives, social workers, child life specialists, psychologists, chaplains,and trained volunteers

65

ElAre there mechanisms for informing parents about hospital policies andprograms?

0 Are there mechanisms for receiving feedback from parents regarding theirsatisfaction with hospital policies and programs?

ElAre there mechanisms for coordinating care among the hospital, commun-ity clinics, community support services, and primary community-basedhealth care providers?

El Does the architectural and interior design of the hospital and allocation ofspace meet the developmental and support needs of children andfamilies?

0 Are mechanisms available which enable families to care for their childrenat home, or in a home-like environment?

0 In-home health care services

0 Respite care programs

0 Transitional care facilities

0 Linkages to community services

6661

IlA Checklist for Research Investigations

0 Does the research design and data analysis reflect a balanced approach,focusing on a family's strengths as well as needs?

ElIs participation presented in a way that families feel they will not jeopar-dize the quality of the services they receive if they do not wish toparticipate?

ElAre consent forms easy to understand?

ElIf a number of research studies ate being conducted in one facility, isthere a mechanism to ensure that families are not overwhelmed withrequests?

Is there a mechanism to ensure that the results of the research are com-municated to families who participate?

6762

FanCar

64

To assist parents and professionals whoare interested in implementing a family-centered approach to care for children withspecial health needs, this section includes

Technical AssistanceThrough funding from the Division of Ma-

ternal and Child Health (DMCH) and theirprevious ongoing activities, the followingorganizations are in the position of offeringassistance to individuals interested inimplementing family-centered care.

Association for the Care of Children's Health(ACCH), 3615 Wisconsin Avenue, N.W.,Washington, DC 20016 (202) 244-1801

ACCH is a multidisciplinary association ofprofessionals and parents which promotesquality psychosocial health care for childrenand their families in all health care settingsthrough education, research, advocacy, andnetworking. ACCH has available written andauaiovisual materials as well as consultationservices to assist those interested in imple-menting a family-cent' led approach to carefor children with special health needs.

Federation for Children with Special Needs,312 Stuart Street, Boston MA 02116(617) 482-2915

The Federation has received funds fromMCH for the Collaboration Among Parentsand (Health) Professionals (CAPP) project.This project is designed to increase andencourage parent involvement in the healthcare of their children who have a chronicillness or disability. CAPP also promotespartnerships between parents and healthcare professionals.

National Center for Networking Community-Based Services, Georgetown University ChildDevelopment Center, 3800 Reservoir Road ,

N.W., Washington, DC 20007 (202) 625-7033

The Network consists of state leaders inhealth, mental health, and education in over35 states as well as a national task force withrepresentation from key federal agencies anddepartments in each of these area .. The proj-ect provides tecnnical assistance and train-ing to state:, to enhance interagency collabo-ration and to improve services to childrenand fan 3.

69

selected examples of technical assistanceorganizations, audiovisual and written mate-rials, and programs currently utilizing afamily-centered approach to care.

National Maternal and Child HealthResource Center, C ,lege of Law Building,The University of Iowa, Iowa City, IA52242, (319) 335-9046

The Center promotes the improvement andexpansion of maternal and child healthservices, including services for children withspecial health care needs. Center activitiesinclude dissemination of informationprovision oi technical assistance, and..evelopment of training materials.

Audiovisual and WrittenMaterials

Listed below are several audiovisual andwritten materials that further define family-centered care by illustrating parent/profes-sional collaboration and/or by providinggreater insight into the experiences of chil-dren with special needs and their families.

Audiovisual Materials

Only A Breath

This is a sensitive exploration of the livesof five families with children who areventilator-assisted and living at home. Itexplores the families support needs throughinterviews with children, siblings, parents,and health care providers. This film is valu-able for both parents of children with specialhealth needs and professionals servingthem.

Length: 30 minutesFormat: W or 3A" VHSContact: Teaching Films, Inc.

Educational Services, Inc.930 Pitner AvenueEvanston, IL 60202(800) 323-9084

Parents To Parents: GriefAnger"It's Not True""What Did I Do Wrong"

These tapes were developed by parents topresent their perspective on !our commonissues faced by parents of children with spe-cial needs. They are excellent tools forencouraging discussion about the emotionalneeds of families and can be used by bothparents and professionals caring for childrenwith special needs.

Length: Approx. 25 minutes eachFormat: 1/2" or W VHS 1/2' BETAContact: West Virginia Advocates for the

Developmentally Disabled1200 Quarrier Street, Suite 27Charleston, WV 25301(304) 346-0847

Seasons Of Caring

This film portrays the strengths and sup-port needs of three families caring for pre-school children with special health needs.The film presents some of the stresses expe-rienced by the families as well as the copingstrategies they have wed. It also showssome of the attitudes, approaches, and ser-vices they have found helpful. Parents, edu-cators, and health care professionals are themain audiences for this film. Detailed cur-riculum materials accompany the film.

Length: 40 minutesFormat: 16mm

W' or 3A" VHS1/2" BETA

Contact: Association for the Care ofChildren's Health3615 Wisconsin Avenue, N.W.Washington, DC 20016(202) 244-1801

The Family Experience

This film portrays families of infants whoare sick or at-risk during their first year oflife. In interviews with both families andhealth and education professionals, the filmexplores some of the issues facing familiesof very young children and presents theirunique needs. There is an accompanyingmanual which describes the developmentalprocess of parenting and the disruptions tothe parenting process which can occur withprematurity and illness in the infant.

7 o

Length: 45 minutesFormat: 1/2" or 3/4" VHSContact: Carole Brown

Year One ProjectDepartment of Special EducationThe George Washington University2201 G Street, N.W.Washington, DC 20052(202) 676-6170(202) 994-1510

The Invisible Society

This film was prepared as an informa-tional piece for legislators and communityleaders in Arizona but goes beyond its origi-nal intent. Families of children with achronic illness discuss many of the centralissues for parents and professionals caringfor children with special health needs. Thefilm defines chronic illness and presentsnational statistics along with those specificto Arizona.

Length: 25 minutesFormat: 1/2" VHSContact: Arizona Consortium for Children

with Chronic IllnessBarbara HopkinsP.O. Box 2128Phoenix, AZ 85001(602) 838-9006

Written Materials

A Difference in the Family Life with aDisabled Child

In this book, Helen Featherstone providesa mother's sensitive discussion of how par-ents and families cope with their feelingsand demands o i the family, and what typesof support are most helpful. Available fromthe Association for the Care of Children'sHealth, 3615 Wisconsin Ave., N.W., Washing-ton, DC 20016 (202) 244-1801.

After the Tears

After the Tears is a beautifully writtenbook by and for parents of children with dis-abilities. Interspersed between very personalvignettes are practical suggestions and ideason the struggles and triumphs of raising achild with a disability; dealing with otherpeople including relatives, strangers, andprofessionals; meeting the needs of one'sself, one's child, and one's family; and grow-ing and coping as part of a special family, Aresource section includes a listing ofnational support groups as well as outstand-

65

66

ing printed and visual materials. This bookoffers support and affirmation to familiesand provides professionals with a wonderfulopportunity to learn from families abouttheir experiences. Available from Harcourt,Brace, and Jovanovich publishers and theAssociation for the Care of Children's Health,3615 Wisconsin Avenue, N.W., Washington,DC 20016 (202) 244-1801.

Equals in this Partnership: Parents ofDisabled Children and At-Risk Infantsand Toddlers Speak to Professionals

This bor,idet is an outgrowth of aDecember, 1984 conference jointly spon-sored by the Division of Maternal and ChildHealth, the Office of Special Education andRehabilitative Services, and the NationalCenter for Clinical Infant Programs. Asreflected in the thoughts of seven of the par-ents and professionals who participated inthe meeting, the conference also providedan invaluable opportunity for parents andprofessionals to learn from each other'sideas and experiences. In a powerful way,this booklet clearly reflects the promise ofparent/professional collaboration. Availablefrom the National Center for Clinical InfantPrograms, 733 15th Street, N.W., Suite 912,Washington, DC 20005 (202) 347-0308.

Families, Professionals, and ExceptionalityA Special Partnership

This 'look written by Ann and Rudd Turn-bull addresses the important roles played byboth families and professionals in the livesof individuals with special needs. An excel-lent resource for both families and profes-sionals, the authors apply a family systemsapproach in discussing the needs of an indi-vidual with a disability and their familyacross the life cycle. Specific topics includestrategies for improving communicationbetween families and professionals, increas-ing the advocacy skills of families, improvingthe educational IEP process, and handlingstress. The Appendix includes several usefulresources including the Family PreferenceInventory. This inventory provides a frame-work for families to identify the informationthat they wish to receive about their child aswell as the manner in which they wish toreceive it. Available from Charles E. MerrillPublishing Company, 1300 Alum Creek,Columbus, OH 43216.

Iowa Health Care Guidelines

Funded by Ce Division of Maternal andChild Health, the Iowa Health Care Guide-lines Project developed four sets of guide-

Ij

lines for professionals involved in the care pfchildren with chronic illnesses or disabili-ties. In addition to the guidelines for physi-cians, nurses, social workers, and therapists,additional guidelines have also been devel-oped by and for families of children withspecial needs to assist them in the selection,implementation, coordination, and evalua-tion of services for their child. These docu-ments emphasize the need tor improvedcommunication and cooperation betweenfamilies and professional caregivers andrecommend the development of individual-ized vice plans for children with specialneeds and their faii.ilies. Also included ineach set of guidelines are the Principles ofHealth Care which provide the philosophicalbasis for the guidelines and are intended topromote optimal health care for all childrenand their ramifies. The publications reflectthe joint contributions of parents and profes-sionals from many disciplines. Availablefrom Campus Stores, 208 G.S.B., University ofIowa, Iowa City, IA 52242.

Let's Play with Our ChildrenNew Directions for Exceptional Parenting

These companion booklets, written by PatDowney, the parent of a child with severedisabilities, focus on some of the positiveways of coping with the challenges of caringfor a child with complex needs. These booksare full of ideas for play activities for chil-dren and emphasize the importance of play-ful, nurturant interactions between parentsand children. Available from ACCH, 3615Wisconsin Avenue, N.W., Washington, DC20016 (202) 244-1801.

Meeting the Challenge of Disability orChronic IllnessA Family Guide

This book by Lori A. Goldfarb, Mary JaneBrotherson, Jean Ann Summers and Ann P.Turnbull, proposes a supportive model forso .113 the difficult problems that confrontfamilies facing the daily challenges of illnessand disability. A deep respect for the unique-ness and resilience of families underlies thisbook. At the outset the authors state theirbeliefs that all families have strengths, thatthere are no answers that work for everyone,that families and family needs change overtime, and that families are capable of thriv-ing while responding to the special demandsposed by a chronic disability.

The book has two main sections: TakingStock and Problem Solving. Each sectioncontains a series of practical exercises tohelp families learn more about their beliefsand values and the ways in which they func-tion both as individuals and as members of

a group. In the problem solving section, theauthors present a model for step-by-stepproblem solving that takes into account fam-ily needs, priorities and values. Throughoutthe book the authors use case studies toeffectively illustrate their points. The bookincludes an excellent resource section.Available from Paul Brookes Publishing, P.O.Box 10624, Baltimore, Maryland 21285-0624(301) 377-0883.

Parent Resource Directory

Developed as part of the Association forthe Care of Children's Health (ACCH)family-centered care grant, the directory listsmore than 160 parents of children with spe-cial health needs from across the UnitedStates and Canada. The purpose of the direc-tory is to encourage networking and collabo-ration among those caring for or providingsupport services Zo children with chronicillnesses or disabling conditions. The direc-tory is organized by state and province andincludes the parents' name, address, tele-phone numbers(s), group affiliation(s), andtheir child's disability. The directory alsoincludes the skills, interests and experiencesparents have had in promoting a family-centered approach to health care. The direc-tory is indexed alphabetically and by disabil-ity. To receive a copy of the directory, senci$3.00 (includes shipping and handling) toACCH, 3615 Wisconsin Avenue, N.W.,Washington, DC 20016 (202) 244-1801.

Raising A Handicapped Child: A HelpfulGuide for Parents of the Physically Disabled

This book by Charlotte Thompson is acomprehensive, sensitively written guide forparents of children with physical disabilities.Most of the information is practical andincludes several excellent suggestions forfurther reading as well as anecdotes takenfrom the author's thirty years of pediatricpractice. Available from William Morrow andCompany, Inc., 105 Madison Avenue, NewYork, NY 10016.

Reaching OutA Directory of VoluntaryOrganizations in Maternal and Child Health

Developed for health professionals, educa-tors, administrators, and individuals with orcaring for a person with a chronic illness ordisability, this comprehensive directory listsseveral hundred voluntary organizations andself-help clearinghouses in the United Statesand internationally. These organizations pro-vide a variety of services and activities,including publishing educational materials,disseminating general information, making

72

referrals, and furnishing support to as ,t theprofessional or individual in coping wan aspecific need. Available from the NationalCenter for Education in Maternal and ChildHealth (NCEMCH), 38th and R Streets, N.W.,Washington, DC 20057 (202) 625-8400

ProgramsBelow is a listing of all the programs that

are described in this publication. Althoughthe programs were presentei in this publica-tion as examples of a particular element offamily-centered care, in many cases they areillustrative of sever?! of the elements. As wasmentioned in the introduction, the imple-mentation of one element often facilitates, orgoes hard-in-hand with, the others. Thepage where the full program descriptionappears is noted in parentheses.

Alliance of Genetic Support Groups38th and R Streets, N.W.Washington, DC 20057(202) 625-7853(page 43)

Adolescent Autonomy ProjectSharon L Hostler, M.D.Children's Rehabilitation Center2270 Ivy RoadCharlottesville, VA 22901(804) 924-8184(page 34)

Arizona Consortium for Children withChronic Illness

Barbara Hopkins, Pare ,t Representative,Executive Committet

P.O. Box 2128Phoenix, AZ 85001(602) 838-9006(page 1;)

AUNT FABSNational Center on Family-Based ServicesUniversity of IowaOakdale CampusIowa City, IA 52242(319) 335-4130(page 19)

Camps for Children with Special Needs andTheir Families

1987 Parents' Guide to Accredited CampsAmerican Camping Association100 Bradford WoodsMartinsville, IN 46151(page 34)

67

68

Camp Glyndon (for children with diabetes)Dan Markowitz3701 Old Court Road, Executive ParkSuite 20Baltimore, MD 21208(301) 486-5515(page 34)

Camp Kaleidoscope (for children withchronic illnesses)

Thomas K. Kinney, M.D. or Alex Gordon,M.Ed.

P.O. Box 2916Duke University Medical CenterDurham, NC 27710(page 34)

Camp Latgawa (for children with spinabifida and their families)

Theresa Schneider1664 Hammel RoadEagle Point, OR 97524(503) 826-6194(page 34)

Camp Ozawizeniba (for children and youthwith epilepsy)

Vicki Florine2701 University Avenue, S.E.Suite 106Minneapolis, MN 55416(612) 376-5031(page 34)

Camp Sunshine (for children with cancer)Julie RussemChildhood Cancer Support Program1921 West StreetPortland, ME 04102(207) 775-5481(page 34)

Candlelighters2025 Eye Street, N.W.Suite 1011Washington, DC 20006(202) 659-5136(page 29)

Child and Family Support ProjectRobin Thomas, R.N., Ph.D.Children's Hospital Medical Center4800 Sand Point WaySeattle, WA 98105(page 49)

Children's Case Resolution SystemPaula T. FindleyOffice of the GovernorState OmbudsmanEdgar A. Brown Building1205 Pendleton StreetColumbia, SC 29201(803) 734-0457(page 11)

7 3

Children's Home Health NetworkKathleen Murphy, M.S.W.Division of Services for Crippled Children1919 W. Taylor StreetChicago, IL 60612(312) 966-6380(page 46)

Chronic Health Impaired Program (CHIP)Joan Cace or Sylvia MatthewsBaltimore City Public School SystemBaltimore, MD 21217(301) 396-1611(page 34)

Chronic Illness Teaching ProgramBarbara W. Desguin, M.D.Department of Pediatrics and Human

DevelopmentB-240, Life Sciences BuildingMichigan State UniversityEast Lansing, MI 48824-1317(page 12)

Community Advisory BoardChildren's Hospital Child Health CentrePhyllis KaneAlberta Children's Hospital1820 Richmond RoadCalgary, Alberta CANADA T2T 5C7(page 11)

Coordination of Care for ChronicallyIll Children Program

Thomas Nattell, M.S.W.New York State Department of HealthTowel Building, Room 878Empia: State PlazaAlbany, NY 1'2137(518) 473-7163(page 48)

Family-Centered Planning ProgramAudrey Leviton, DirectorDepartment for Family Support ServicesKennedy Institute for Handicapped Children707 BroadwayBaltimore, MD 21205(301) 522-5480(page 5)

Family Friends ProjectMeredith Miller, Ph.D., Project DirectorJane Diao, M.S.W., Program AssociateNational Council on the Aging (NCOA)600 Maryland Avenue, S.W., West Wing 100Washington, DC 20024(202) 479-1200(page 24)

Helping Grandparent ProgramElaine Schab-BraggKing County ARC2230 8th AvenueSeattle, WA 98121(206) 622-9212(page 42)

Home-Based Support Services forChronically Ill Children and Their Families

Barry Sherman, Ph.D.Tower Building, Room 878Empire State PlazaAlbany, NY 12237(518) 473-7163(page 48)

Iowa Health Care GuidelinesAlfred Healy, M.D.Division of Developmental DisabilitiesUniversity Hospital SchoolUniversity of IowaIowa City, IA 52242(319) 353-6390Copies may be obtained from:Campus Stores208 G.S.B.University of IowaIowa City, IA 52242(page 29)

Let's Play to GrowLisa Morris, Program Coordinator1350 New York Avenue, N.W.Suite 500Washington, DC 20005(page 34)

Medicaid Waiver ProgramsState Medicaid Agency orHealth Care Financing AdministrationEast High Rise Building6325 Security BoulevardBaltimore, MD 21207(page 23)

Medically Fragile Children's ProgramGeorgia Clever leyCoordinated Community In-Home Care

(CCIC)PERA Building, Room 516P.O. Box 2348Santa Fe, NM 87504-2348(505) 827-4923(page 23)

Michigan Family Subsidy ProgramMichigan Department of Mental HealthLewis Cass BuildingLansing, Ml 48926(517) 373-3740(page 23)

National Information System for HealthRelated Services (NIS)

Girish G. Yajnik, Project DirectorCenter for Developmental DisabilitiesUniversity of South Carolina1244 Blossom StreetColumbia, SC 29208(803) 774-4435Or access the system directly by calling(800) 922-9234(page 19)

74

Nurse Clinician/Parent ConsultantDuke University Medical CenterDepartment of PediatricsDivision of Hematology-OncologyBox 2916Durham, NC 27710(919) 684-3401(page 41)

Parent Advisory CommitteeBoston Children's HospitalBetsy AndersonFederation for Children with Special Needs312 Stuart StreetBoston, MA 02116(6:7) 482-2915Or

Barbara PopperChildren in Hospitals, Inc.31 Wilshire ParkNeedham, MA 02192(617) 444-3877(page 11)

Parent Advisory CommitteeChildren's Medical ProgramKathy OldeRoute 1, Box 119New Site, MS 38859(601) 728-5121(page 10)

Parent ConsultantsRhode Island HospitalPediatric Oncology ServiceJoy Benson or Helena G. Richards593 Eddy StreetProvidence, RI 02902(401) 277-5497(page 41)

Parent Training and Information andTechnical Assistance Centers Central Office

Technical Assistance for Parent Programs(TAPP)Martha Ziegler, Director312 Stuart Street, 2nd FloorBoston, MA 02116(617) 482-2915(page 19)

Regional Centers

New Hampshire Parent InformationCenter (PIC)

Judith Raskin, DirectorP.O. Box 1422Concord, NH 03301(603) 224-7005(page 19)

69

Parent Advocacy Coalition for EducationalRights (PACER)

Marge Goldberg & Paula Goldberg,Co-Directors

4826 Chicago Avenue, SouthMinneapolis, MN 55417-1055(612) 827-2966(page 19, 51)

Parents Advocating Vocational Education(PAVE)

Martha Gentili, Director1010 S.1 StreetTacoma, WA 98405(206) 272-7804(page 19)

Parents Educating Parents (PEP)Mildred J. Hill, DirectorGeorgia/ARC1851 Ram Runway, Suite 104College Park, GA 30337(404) 761-2745(page 19)

For more information on these regionalcenters and the state training centerscontact:

U.S. Department of EducationOffice of Special Education and

Rehabilitative Services (OSERS)Office of Special Education ProgramsDivision of Personnel PreparationSwitzer Building, Room 4620400 Maryland Avenue, SWWashington, DC 20202(202) 732-1032Jack Tringo, Project Officer(page 19)

Parents Helping Parents, Inc.Florene Poyadue, Director535 Race Street, Suite 220San Jose, CA 95126(408) 288-5010(page 19, 41)

Pilot Parents2005 North CentralSuite 100Phoenix, AZ 85004(602) 271-4012 or (602) 969-8209(page 43)

Project DakotaLinda Kjerland, Project DirectorDakota, Inc.680 O'Neill DriveEagan, MN 55121(612) 455-2321(page 10)

70

Project HopeAngela Deal, CoordinatorFamily, Infant, and Preschool ProgramWestern Carolina Center300 Enola RoadMorganton, NC 28655(704) 433-2661(page 42)

Project NexusRobin HazelKansas University Affiliated Facility377 Haworth HallUniversity of KansasLawrence, KS 66045(913) 864-4954(page 48)

Project Serve101 Tremont Street, Room 615Boston, MA 02108(617) 574-9493(page 47)

Roundhouse Conference on Children withDisabilities

Effective Parents Project, Inc.930 Ute AvenueGrand Junction, CO 81501(303) 241-4068(page 13)

Sibling Information NetworkConnecticut's University Affiliated ProgramBox U-64, School of Education249 Glenbrook RoadThe University of ConnecticutStorrs, CT 06268(203) 486-4034(page 42)

SKIP Sick Kids (Need) Involved People216 Newport DriveSeverna Park, MD 21146(301) 261-2602(page 43)

Texas Respite Resource NetworkJennifer Cemoch, Ph.D.P.O. Box 7330, Station ASan Antonio, TX 78285(512) 228-2576(page 24)

Summary of Elements ofFamily-Centered Care

1. Recognition that the family is the constant in thechild's life while the service systems and personnelwithin those systems fluctuate.

2. Facilitation of parent/professional collaboration atall levels of health care:

care of an individual child;program development, implementation, andevaluation; andpolicy formation.

3. Sharing of unbiased and complete information withparents about their child's care on an ongoing basisin an appropriate and supportive manner.

4. Implementation of appropriate policies andprograms that are comprehensive and provideemotional and financial support to meet the needsof families.

5. Recognition of family strengths ...nd individualityand respect for different methods of coping.

6. Understanding and incorporating the developmentalneeds of infants, children, and adolescents and theirfamilies into health care delivery systems.

7. Encouragement and facilitation of parent-to-parentsupport.

8. Assurance that the design of health care deliverysystems is flexible, accessible, and responsive tofamily needs.

7671

References Anderson, B. (1985) Parents of childrenwith disabilities as collaborators in healthcare. Coalition Quarterly, 4,(2,3), 3-4,15-18.

Baker, B. L. (1983). Parents as teachers:Issues in training. In J. A. Mu lick & S. M.Pueschel (Eds.), Parent-professionalpartnerships in developmental disabilityservices (pp. 55-74). Cambridge, MA:Academic Guild.

Barnard, K. (1985). Toward an era of familypartnership. Equals in this partnership:Parents of disabled and at-risk infants andtoddlers speak to professionals (pp. 4-5).Washington, DC: National Center for Clin-ical Infant Programs.

Beckett, J. (1985). Comprehensive care formedically vulnerable infants and toddlers:A parent's perspective. Equais in thispartnership: Parents of disabled and at-risk infants and toddlers speak to pru:s?s-sionals (pp. 6-13). Washington, DC:National Center for Clinical InfantPrograms.

Bertaina, B. (1985, April 19). Personal tes-timony before the Select Committee onChildren, Youth, and Families, U.S. Houseof Representatives. Families with DisabledChildren: Issues for the 1980's (Publica-tion No. 48-137 0). Washington, DC: US.Government Printing Office.

Bronfenbrenner, U. (1977). Toward anexperimental ecology of human develop-ment. American Psychologist, 32(7),513-531.

Cadman, D., Shurvell, B., Davies, P., & Brad-field, S. (1984). Compliance in the com-munity with consultants' recommenda-tions for developmentally handicappedchildren. Developmental Medicine andChild Neurology, 26, 40-46.

Cetroni, D. (1985, February). Excerpts fromProject Zero to Three Parents' Panel. TheSignal (p. 2). Washington, DC: NationalCenter for Clinical Infant Programs.

Cina, S., & Caro, F. G. (1984, September).Supporting families who care for severelydisabled children at home: A public pol-icy perspective. New York: CommunityService Society of New York.

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

TI

Cochran, M. M & Brassard, J. A. (1979).Child development and personal socialnetworks. Child Development, 50, 601-616.

Crnic, K. A., Friedrich, W. N., & Greenberg,M T. (1983). Adaptation of families withmentally retarded children: A model ofstress, coping, and family ecology. Ameri-can Journal of Mental Deficiency, 88(2),125-138

Crockenberg, S. B. (1981). Infant irritability,mother responsiveness, and social influ-ences on the security of infant-motherattachment. Child Development, 52,857-865.

Desguin, B. W. (1986). Chronic illness inchildren. An educational program for aprimary-care pediatric residency. Ameri-can Journal of Diseases in Children, 140,1246-1249.

DesJardin, C. (1971). How to organize aneffective parent group and move bureau-cracies. Chicago: Coordinating Council forHandicapped Services.

Doernberg, N. L. (1978). Some negativeeffects on family integration of health andeducational services for young handi-capped children. Rehabilitation Literature,39(4), 107-110.

Downey, P. (1986). Let's play with our chil-dren. Washington, DC: Association for theCare of Children's Health.

Duffy, S. (1984). In S. Duffy, K. McGlynn, J.Mariska, & J. Murphy. Acceptance is onlythe first battle: How some parents ofyoung handicapped children have copedwith common problems. Missoula, MT:Montana University Affiliated Program,University of Montana.

Duffy, S., McGlynn, K., Mariska, J., & Murphy,J. (1984). Acceptance is only the first bat-tle: How some parents of young handi-capped children have coped with com-mon problems. Missoula, MT: MontanaUniversity Affiliated Program, University ofMontana.

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

Freedman, L. (1986, June). Perspectivesfrom states. Presented at the Associationfor the Care of Children's Health Family-Centered Care Panel, Washington, DC.

Gallagher, J. J., & Gallagher, G. C. (1978).Family adaptation to the handicappedchild and assorted professionals. In A. &R. Turnbull (Eds.), Parents speak out:Views from the other side of a two waymirror (pp.198-210). Columbus, OH:Charles E. Merrill.

Gleidman, J., & Roth, W. (1980). The unex-pected minority: Handicapped children inAmerica. New York: Harcourt BraceJovanovich.

Goldberg, A. I., Faure, E. A. M., Vaughn, C. J.,Snarski, R., & Seleny, F. L. (1984). Homecare for life-supported persons: Anapproach to program development. Jour-nal of Pediatrics, 104(5), 785-795.

Goldstein, S., Strickland, B., Tumbull, A. P., &Curry, L. (1980). An observational analy-sis of the IEP conference. ExceptionalChildren, 46, 278-286.

Gould, P. T., & Moses, L. S. (1985). Milddevelopmental delays from a parent'sperspective. Equals in this partnership:Parents of disabled and at-risk infants andtoddlers speak to professionals (pp. 14-17). Washington, DC: National Center forClinical Infant Programs.

Growing with your child. Case history: Wedon't know what to do with Mike thissummer. (1978). The Exceptional Parent,8(3), C18-C22.

Hanson, M. (1986, Fall). Straight from theheart. Sib page. Storrs, CT: Sibling Infor-mation Network.

Healy, A., Keesee, P., & Smith, B. (1985).Early services for children with specialneeds: Transactions for family support.Iowa City: University of Iowa.

Healy, A., & Lewis-Beck, J. A. (1987a).Improving health care for children withchronic conditions: Guidelines for fami-lies. Iowa City: University of Iowa.

Healy, A., & Lewis-Beck, J. A. (1987b).Improving health care for children withchronic conditions: Guidelines for physi-cians. Iowa City: University of Iowa.

Homer, M. M., Rawlins, P., & Giles, K.(1987). How parents of children withchronic conditions perceive their ownneeds. Maternal-Child Nursing Journal,12(1), 40-43.

Ireys, H. (1981). Health care for chronicallydisabled children and their families. Inthe Report of the Select Panel for thePromotion of Child Health. Better HealthCare for Our Children: A National Strategy,Vol. IV. (DHHS-PHS-Publication No. 79-550711). Washington, DC: U.S. Govern-ment Printing Office.

Treys, H. T., Moynihan, L. C., Perrin, J. M., &Shayne, M. W. (1983, April). Chronicallyill children in America: Background andrecommendations. Nashville, TN: Centerfor the Study of Families and Children,Vanderbilt Institute for Public PolicyStudies.

7 8

Iscoe, L., & Bordelon, K. (1985). Pilot Par-ents: Peer support for parents of handi-capped children Children's Health Care,14(2), 103-109.

Jefferson, C. (1986, Fall). Disabilities-Thelanguage we use. Eye on Family Health(pp. 5-6). Madison, WI: Center for PublicRepresentation.

Judge, G. (1985, February). Excerpts fromProject Zero to Three Parents' Panel. TheSignal (p. 1). Washington, DC: NationalCenter for Clinical Infant Programs.

Kaufman, A. B. (1985). The high-risk child inthe big hospital: What parents can do.Unpublished manuscript.

Kjerland, L. (1986, June). Perspectives fromselected innovative family-centered careprojects. Presented at the Association forthe Care of Children's Health Family-Centered Care Panel, Washington, DC.

Kohrman, A. F., & Diamond, L. (1986). Insti-tutional and professional attitudes:Dilemmas for the chronically ill child.Topics in Early Childhood Special Educa-tion, 5(4), 82-91.

Longo, D., & Bond, L. (1984). Families of thehandicapped child: Research and prac-tice. Family Relations, 33, 57-65.

Lukas, B. G. (1975). Respite care. The Excep-tional Parent, 5(4), 2-3.

Mariska, J. (1984). In S. Duffy, K. McGlynn,J. Mariska, & J. Murphy. Acceptance isonly the first battle: How some parents ofyoung handicapped children have copedwith common problems. Missoula, MT:Montana University Affiliated Program,University of Montana.

Miles, M. S., & Carter, M. C. (1985). Copingstrategies used by parents during theirchild's hospitalization in an intensive careunit. Children's Health Care, 14(1), 14-21.

Nathanson, M. N. (1986). Organizing andmaintaining support groups for parents ofchildren with chronic illness and handi-capping conditions. Washington, DC:Association for the Care of Children'sHealth.

Nover, A. (1985, January). State of the art inworking with families. Paper presented ata meeting of the Ad Hoc Family AdvisoryCommittee to Habilitative ServicesBranch, Department of Health and HumanServices, Washington, DC.

Oster, A. (1985). Keynote address. Compre-hensive care for medically vulnerableinfants and toddlers: A parent's perspec-tive. Equals in this partnership: Parents ofdisabled and at-risk infants and toddlersspeak to professionals (pp. 26-32).Washington, DC: National Center for Clin-ical Infant Programs.

73

74

Pizzo, P. (1983). Parent to parent. Boston:Beacon Press.

Pless, I. B., & Satterwhite, B. (1972). Chronicillness in childhood: Selection, activities,and evaluation of non-professsional fam-ily counselors. Clinical Pediatrics, 11(7),403-410.

Poyadue, F. (1986, June). Perspectives fromselected innovative family-centered careprojects. Presented at the Association forthe Care of Children's Health Family-Centered Care Panel, Washington, DC.

Rubin, S., & Quinn-Curran, N. (1983). Lost,then found: Parents' journey through thecommunity service maze. In M. Seligman(Ed.), The family with a handicappedchild: Understanding and treatment(pp. 63-94). Orlando, FL: Grune &Stratton.

Shapiro, J. (1983). Family reactions-copingstrategies in response to the physically illor handicapped child: A review. SocialScience and Medicine, 17(14), 913-931.

Shayne, M., & Cerreto, M. (1981). Notes onparent group meetings. Nashville, TN:Vanderbilt Institute for Public Policy.

Sherman, B. R., & Cocozza, J. J. (1984).Stress in families of the developmentallydisabled: A literature review of factorsaffecting the decision to seek out-of-homeplacements. Family Relations, 33(1),95-104.

Shonkoff, J. (1983). A perspective on pedi-atric training. In J. A. Mil lick & S. M. Pue-schel (Eds.), Parent-professional partner-ships in developmental disability services(pp. 75-88). Cambridge. MA: AcademicGuild.

Silverman, P. (1980). Mutual help groups:Organization and development. BeverlyHills: Sage Publications.

Simons, R. (1985). After the tears. New York:Harcourt Brace Jovanovich.

Stein, R. E. K., & Jessop, D. J. (1984). Doespediatric home care make a difference forchildren with chronic illness? Findingsfrom the Pediatric Ambulatory CareTreatment Study. Pediatrics, 73(6),845-853.

The Task Force on Pediatric Education(1978). The future of pediatric education.Evanston, IL: American Academy ofPediatrics.

Thomas, R. B. (1986a). Ventilator depen-dency consequences for the child andfamily. Unpublished manuscript, Chil-dren's Hospital Medical Center, Seattle,WA.

/9

Thomas, R. B. (1986b). The family's expe-rience with a child's complex health con-cerns. Unpublished manuscript, Chil-dren's Hospital Medical Center, Seattle,WA.

Turnbull, A. P. (1978). Moving from being aprofessional to being a parent: A startlingexperience. In A. P. Tumbull & H. R.Turnbull (Eds.), Parents Speak Out.Columbus, OH: Charles E. Merrill.

Turnbull, A. P., Blue-Banning, M., Behr, S., &Kerns, G. Family research and interven-tion: A value and ethical examination.Unpublished manuscript, University ofKansas, Lawrence, KS.

Turnbull, A. P., & Summers, J. A. (1985,April). From parent involvement to familysupport: Evaluation to revolution. Paperpresented at the Down Syndrome State-of-the-Art Conference, Boston, MA.

Turnbull, A. P., & Tumbull, H. R. (1985, April19). Personal testimony before the SelectCommittee on Children, Youth, and Fami-lies, U.S. House of Representatives. Fami-lies with Disabled Children: Issues for the1980's (Publication No. 48-137 0).Washington, DC: U.S. Government PrintingOffice.

Vincent, L. J. (1985). Family relationships.Equals in this partnership: parents of dis-abled and at-risk infants and toddlersspeak to professionals (pp. 33-41).Washington, DC: National Center for Clin-ical Intant Programs.

Weyhing, M. C. (1983). Parental reactions tohandicapped children and familialadjustments to routines of care. In J. A.Mulick & S. M. Pueschel (Eds.), Parent-professional partnerships in develop-mental disability services (pp. 125-138).Cambridge, MA: Academic Guild.

Wikler, L., Wasow, M., & Hatfield, E. (1981).Chronic sorrow revisited: Parent vs. pro-fessional depiction of the adjustment ofparents of mentally retarded children.American Journal of Orthopsychiatry, 51,63-70.

Wikler, L., Wasow, M., & Hatfield, E (1983).Seeing strengths in families of develop-mentally disabled children. Social Work,28(4), 313-315.

Yoak, M., & Chester, M. (1983). Self-helpgroup structures and activities: Implica-tions for professional roles. Ann Arbor:Center for Research on Social Organiza-tion, University of Michigan.

Zigler, E. (1986, September). The familyresource movement: No longer the coun-try's best kept secret. Presented at thenational conference of the FamilyResource Coalition, Chicago, IL.