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Journal of Early Intervention

DOI: 10.1177/105381510602800401 2006; 28; 227 Journal of Early Intervention

Walker and Lauren Barton Charles Greenwood, Lynne Kahn, Sangeeta Mallik, Joy Markowitz, Donna Spiker, Dale

Donald B. Bailey, JR, Mary Beth Bruder, Kathy Hebbeler, Judith Carta, Michelle Defosset, Recommended Outcomes for Families of Young Children with Disabilities

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227

REGULAR ARTICLES

Recommended Outcomes for Families of YoungChildren with Disabilities

DONALD B. BAILEY, JR.RTI International

MARY BETH BRUDERUniversity of Connecticut

KATHY HEBBELERSRI International1

JUDITH CARTAJuniper Gardens Children’s Project2

MICHELLE DEFOSSETUniversity of North Carolina at Chapel Hill3

CHARLES GREENWOOD2, LYNNE KAHN3, SANGEETA MALLIK1

JOY MARKOWITZWestat

DONNA SPIKER1, DALE WALKER2, LAUREN BARTON1

The Early Childhood Outcomes (ECO) Center was funded by the Office of Special EducationPrograms to promote the development and implementation of child and family outcome measuresfor infants, toddlers, and preschoolers with disabilities. An evidence-based process with extensivestakeholder input led to the identification of five outcomes by which the effectiveness of services forfamilies could be assessed: (a) families understand their child’s strengths, abilities, and specialneeds; (b) families know their rights and advocate effectively for their child; (c) families help theirchild develop and learn; (d) families have support systems; and (e) families are able to gain accessto desired services and activities in their community. These outcomes provide a framework by whichstates and the federal government could document whether early intervention and preschoolprograms are providing demonstrable benefits for families, and provide the basis for developingmeasurement systems to determine the extent to which such benefits have been attained.

Much has been written about the rationalefor working with families of young childrenwith disabilities (e.g., Diamond & Kontos,

2004; Kaiser & Hancock, 2003; Odom &

Wolery, 2003) and the practices that consti-tute appropriate and effective family



228

support (e.g., Barnett, Clements, Kaplan-Estrin, Fialka, 2003; Blue-Banning, Sum-mers, Frankland, Nelson, & Beegle, 2004;Brady, Peters, Gamel-McCormick, & Ve-

nuto, 2004). Typical evaluations of familysupport efforts have focused either on

documenting practices with families (e.g.,Bailey, Buysse, Edmonson, & Smith, 1992;McWilliam, Tocci, & Harbin, 1998; Trivette,Dunst, Boyd, & Hamby, 1996 or assessingthe extent to which parents are satisfied withservices (e.g., Bailey, Hebbeler, Spiker, Scar-borough, & Mallik, 2004; Iversen, Shimmel,Ciacera, & Prabhakar, 2003; Lanners &

Mombaerts, 2000).Does documenting professional practice

and family satisfaction constitute sufficientevidence of the effectiveness of family sup-port efforts? This article is based on the

assumption that although such data are

important in evaluating program quality,the real test is whether a program promotespositive outcomes for families. A recent

article based on the National Early Interven-tion Longitudinal Study (Bailey, Hebbeler,Spiker, Scarborough, Mallik, & Nelson,2005) found that near the end of earlyintervention, around the child’s third birth-day, families reported a high level of attain-ment of many family outcomes as a result ofearly intervention. Although this study pro-vides important evidence of the benefits ofearly intervention for families, much workremains to be done in terms of identifyingand documenting the full range of familybenefits that might be expected from earlyintervention and preschool programs.As a consequence, the Early Childhood

Outcomes (ECO) Center was funded in 2003by the Office of Special Education Programs,U.S. Department of Education to address

accountability issues in early childhood specialeducation. The ECO center is expected to

work with parents, service providers, state

agency directors, and federal program officersto develop and aid in the implementation ofoutcome measures that could be used by statesand the federal government to evaluate infantand toddler programs operated under Part Cand preschool programs under Part B, Section

619 of the Individuals with Disabilities Edu-cation Act (IDEA. 2004). A major part of thiseffort has focused on family outcomes: de-fining what is meant by family outcomes,developing a rationale for assessing familyoutcomes, reviewing existing frameworks, andmeeting with numerous stakeholders. Using anevidence-based approach with extensive stake-holder input, five family outcomes have beenidentified. This article summarizes this processand provides a description and rationale foreach of the proposed outcomes. We concludewith a discussion of both the opportunities andchallenges inherent in using family outcomesin an accountability framework.

BACKGROUND ANDLITERA T URE PREVIEW

What Is a Family Outcome?We define &dquo;family outcome&dquo; as a benefit

experienced by families as a result of servicesreceived. Although family often refers to theparents or primary caregivers of children withdisabilities, benefit also is possible for siblings,grandparents, or other members of the

extended family unit (Poston, Turnbull, Park,Mannan, Marquis, & Wang, 2003). A familyoutcome is not the receipt of services, butwhat happens as a consequence of providingservices or supports. For example, sharinginformation with parents about their child’scondition is a service; if parents understandthat information and use it to describe theirchild’s condition to others, advocate for

services, or respond effectively to their child’sneeds, a benefit has been experienced anda family outcome has been achieved. Evalu-ating service quality or satisfaction reflects

whether consumers like and appreciate theservices received, but does not necessarilymean that benefit has been received.

The Rationale for AssessingFamily OutcomesMost evaluations of the effectiveness of earlyintervention and preschool programs havefocused on the extent to which they enhancechild outcomes. Reviews of this research

consistently indicate both short- and long-



229

term benefits for children (e.g., Anderson,Shinn, Fullilove et al., 2003; Gorey, 2001;Guralnick, 1998; Ramey & Ramey, 1998).Several arguments, however, suggest thatfamilies also are or should be recipients ofearly childhood services and thus a targetgroup for whom outcomes should be assessed.

Federal legislation is predicated on the

assumption of benefit to families and

family participation. The purposes of earlyintervention for infants and toddlers were

clearly stated in Part H of P.L. 99-457 (nowPart C of IDEA):

The Congress finds that there is an urgentand substantial need (1) to enhance the

development of handicapped infants andtoddlers and to minimize their potential fordevelopmental delay; (2) to reduce the edu-cational costs to our society, including ournation’s schools, by minimizing the need forspecial education and related services...; (3) tominimize the likelihood of institutionalizationand ...maximize the potential for indepen-dent living in society; and (4) to enhance thecapacity of families to meet the special needsof their infants and toddlers... (P.L. 99-457,1986, Sec 671).

Purposes 3 and 4 reflect the intent for earlyintervention to provide sufficient supports sothat families can care for their children athome and have both the skills and motiva-tion needed to provide appropriate care andmeet the developmental needs of theirchildren.

The regulations accompanying IDEA alsoaddress working with families. Both Part Cand Part B emphasize informed consent,

parent participation in decision-making, ac-cess to records, and procedural safeguards.Part C regulations require assessment of

family resources, priorities, and concerns;

procedures to address family needs; andservice coordination. Other entitlement ser-vices under Part C include family training,counseling, home visits, and social workservices. Related services for families of

preschoolers under Part B also include parentcounseling and training, described as helpingparents understand their child’s special needsand acquire skills that enable them to

support the implementation of their child’s

individualized program of services. Other

Part B services for families are social work

services, including group and individual

counseling with the child or family, mobiliz-ing community resources, and working withthe family to address problems in the family’sliving situation that might affect the child’suse of services. Thus, both Parts C and Binclude families as potential recipients andbeneficiaries of services.

Child and family services and goals are

integrally linked in early childhood programs.Early intervention and early childhood spe-cial education rarely reflect a single programor service, but rather involve many differentindividuals, both as recipients of servicesand as providers of services (Odom &

Wolery, 2003). The initial impetus for ser-

vices stems from a child who has or is at-riskfor having a disability. Addressing the de-velopmental and social challenges that ac-company a disabling condition typicallybecomes the primary focus of services. A

young child, however, is part of a family,which has its own needs, resources, priorities,and concerns. The child’s needs often cannot

easily be isolated from his or her familycontext (Carpenter, 2001). As a result, theboundaries between family services and childservices might be blurred. Helping a childlearn a new skill could have a positive effecton family adaptation. Helping a parentlearn how to respond to a child’s tantrumscould have a positive effect by reducingtantrums which, in turn, could improve theparents’ confidence in parenting abilities aswell as overall quality of life, exemplifyingthe transactional nature of both parentingand early intervention (Sameroff & Fiese,2000).

Families play critical roles in their child’s

development; helping families has direct im-plications for the extent to which children

benefit from services. Research providesextensive evidence that parents and the

family environment constitute powerfulforces in shaping children’s development.Multiple dimensions of family life-thevalues and culture of the family, the physicalenvironment of the home; the ways that



230

parents talk with, discipline, and teach theirchildren; the models provided by parents andother family members; the overall tone of

family interactions; the types of out-of-homeexperiences parents provide-all influence

personality, social competence, self-concept,and development (Bruder, 2005; Dunst, 2001;Guralnick, 1999; Hauser-Cram, Warfield,Shonkoff, & Krauss, 2001; Landry, Smith,Swank, Assel, & Vellet, 2001; Osofsky &

Thompson, 2000; Spiker, Boyce, & Boyce,2002).

The special needs of children with dis-

abilities, however, can challenge parents’confidence and competence (Trivette &

Dunst, 2004). Challenging behavior, diffi-

cult-to-read communicative attempts, im-

paired learning, motor deficits, special healthcare needs, or difficulties in eating or sleepingoften mean that parents must alter their

home environments or parenting behaviorsto accommodate their child’s special needs(Gallimore, Weisner, Bernheimer, Guthrie, &

Nihira, 1993; Keogh, Garnier, Bernheimer, &

Gallimore, 2000). Additionally, the necessityof interacting with medical, educational, andtherapeutic systems of care and advocatingfor appropriate services pushes parents to

gain new knowledge and skills as care

coordinators and agents of change and

support for their children.

Providing support to families as they facethe challenges inherent in raising a child withspecial needs would seem to add obviousvalue to any services provided directly to

children. Children spend the largest amountof their time in everyday activities androutines with their families (Bruder, 2001).Support to families could be provided in anynumber of ways as suggested by research onboth traditional parent education models

(e.g., Girolametto, Pearce, & Weitzman,1996; Kaiser & Hancock, 2003; Mahoney etal., 1999; McCollum & Hemmeter, 1997;Mobayed, Collins, Strangis, Schuster, &

Hemmeter, 2000; Wendland-Carro, Piccinini,& Stuart Millar, 1999; Woods, Kashinath, &

Goldstein, 2004) as well as in responsivemodels of family centered practice whichinclude the provision of social support to

families (Dunst, 2001; Dunst & Trivette,1997). As an example of the latter, an

analysis of the relationship between selectedprogram variables and child outcomes usingstructural equation modeling found that themost powerful predictors of child outcomeswere whether a program engaged in family-centered practices and whether those prac-tices resulted in parents’ appraisal of person-al control and perceptions of informal sup-ports (Dunst, 1999).

Family members themselves can be affectedby having a child with a disability, and servicesought to promote positive adaptation andreduce potential negative impacts. Research

provides ample evidence that the effects ofhaving a child with special needs can extendwell beyond caregiving, teaching, and theneed to find services. For many familymembers, there are more personal ramifica-tions of having a child with a significantdisability. Sometimes these ramifications canbe positive (Affleck & Tennan, 1993; Patter-son & Leonard, 1994; Skinner, Bailey,Correa, & Rodriguez, 1999; Turnbull, Blue-Banning, Behr, & Kerns, 1986), as in casesof parents for whom having a child witha disability has provided new insights intowhat is important to them in their lives orhelped provide or redefine a sense of

purpose. Having a child with a disabilitycan promote family cohesion as familymembers come together to pursue a commoncause; bring out strengths that were pre-

viously unrecognized; or open doors to

neighbors, community organizations, or sup-port groups.

In some families, however, having a familymember with a disability can pose personalchallenges to positive adaptation (Clare,Garnier, & Gallimore, 1998). The dailychallenges and pressures of raising a childwith a disability can negatively affect qualityof life. Some family members might experi-ence pessimism, anger, anxiety, guilt, stress,despair, or even depression. Although theseare natural feelings experienced at one timeor another by almost all families, for some,their persistence and strength can compro-mise positive coping and the enjoyment of



231

daily life. And at the extreme, depression andfeelings of hopelessness might reduce their

ability to provide appropriate care and couldresult in negative outcomes for children

(Goodman & Gottlieb, 2002; Hernandez-

Reif, Field, Del-Pino, & Diego, 2000; Jones,Fields, & Davalos, 2000). Research also

provides considerable evidence that how

family members define or appraise life events(McCubbin, Thompson, Thompson, &

McCubbin, 1993; Patterson, 1993) and theextent to which they have adequate formaland informal support systems (Crnic &

Stormshak, 1997; Dunst, Trivette, & Deal,1994; Hauser-Cram et al., 2001) are highlyassociated with successful adaptation.Through positive and appropriate interac-tions with other families, the community,and early childhood programs, families canexperience positive adaptation. Family mem-bers who feel empowered and confident intheir ability to influence services and theirchild’s development are less vulnerable to

negative outcomes, which in turn could havea positive effect on a family’s perceivedquality of life.

Documenting parent and family outcomesmight be especially important for familieswhose children have serious health and de-

velopmental challenges and make relativelylittle progress. Despite our best, sometimesheroic efforts, some children have suchserious disabilities that they make little

progress in their health status, development,or behavioral competence. For some chil-

dren, the fact that early intervention or

preschool programs support stability, pre-vent the loss of skills, and help minimize theneed for out-of-home placements can bea significant accomplishment. Even withadvanced measurement tools, the availabilityof assistive technology, and functional alter-native goals and outcomes, a system thatfocuses exclusively on child progress couldconclude that for such children, services wereineffective or perhaps not warranted. Doingso ignores the possibility of importantbenefits for families who experience challeng-ing, perhaps life-threatening, issues with theirchild.

DERIVINGRECOMMENDED OUTCOMES

The ECO Center was charged with the taskof &dquo;working directly with State educationalagencies, local educational agencies, local

agencies, technical assistance providers, par-ent organizations, parent trainers, otherrelevant organizations, and researchers to

build consensus among stakeholders on whatis important to measure, how the measure-ment should be conducted, the importance ofusing outcome indicators in early interven-tion and preschool special education, and theselection of child outcomes and indicators

and family outcomes and indicators&dquo; (Fed-eral Register, 2003, p. 44320).

Although we had previously developeda framework for assessing family outcomesas a part of the National Early InterventionLongitudinal Study (Bailey et al., 1998), theneed to recommend a set of national out-comes for use in program evaluation neces-sitated revisiting this framework. To developa national set of family outcomes, we

reviewed literature related to family out-

comes and engaged in an iterative processinvolving multiple stakeholders to reachbroad consensus.

MethodTen general steps constituted the process bywhich outcomes were generated and agreedupon, as depicted in Figure 1. We initiallymet with our national advisory board todiscuss plans for how we would identifyfamily outcomes. The board consisted ofa wide range of prominent stakeholders,including several parents of children with

disabilities, researchers, and program admin-istrators at different levels from aroundthe nation 1. The board recommended thatwe start with a literature review and usethat review plus our prior work to nominatean initial set of outcomes. At the end of the

meeting the board agreed that our ulti-mate goal was to identify family outcomesthat were (a) consistent with existing re-

1 Lists of advisory board and work group memberscan be found at www.the-eco-center.org



232

Figure 1.Steps followed in generating family outcomes.

search literature and prevailing philosophicalunderpinnings of early childhood programs;(b) aligned with both the statutes and intentof the Individuals with Disabilities Education

Act; (c) parsimonious and easily understoodby professionals, policy makers, and the

public; and (d) validated by diverse stake-holders as critical indicators of the effective-ness of early intervention and preschoolprograms. We then met with our two work-

groups consisting of Part C early interventioncoordinators and Part B, Section 619 pre-school coordinators to get their reactions tohow we were approaching these issues andsolicit initial suggestions for considerationsin developing a national set of guidelines.

Following those meetings we reviewed theliterature on family outcomes, seeking re-

ports that either used a comprehensive ap-

proach to determining family outcomes asa heuristic for research or that summarizedthe results of activities (e.g., focus groups,surveys) designed to identify appropriateoutcomes for families. Using Psychlnfo andsearching on terms such as families andfamily outcomes we identified only a few

relevant articles. We excluded from consid-eration those articles that examined only oneaspect of working with families, such as anarticle evaluating the effectiveness of a parenttraining program. Our goal was to find workdone by others to think more broadly aboutthe full range of family outcomes. We drewon suggestions by our advisory board forother reports not in the empirical literature,and these suggestions proved fruitful, for

example, leading us to several documents notpublished in traditional outlets yet reflective



233

of the goals for our search. Ten frameworksincorporating a broad continuum of methodswere identified. Four were based on synthesisof best practices by the authors for the

purposes of instrument development, evalu-ation recommendations, or literature reviews(Administration for Children, Youth, andFamilies, 1998; Bailey et al., 1998; Brooks-Gunn, Berlin, & Fuligni, 2000; Council onQuality Leadership, 2004); three were basedon focus groups or discussions amongstakeholders (OSEP Early Childhood Out-comes and Indicators Focus Group, 2003;Family Strand Participants, National GoalsConference, in press; Roberts, Innocenti, &

Goetz, 1999); and three were based on

systematic studies involving both quantita-tive and qualitative methodologies (Bruder,2005; Early Childhood Research Institute onMeasuring Growth and Development, 1998;Park, Hoffman, Marquis et al., 2003). Adescription of the context for each frame-work and the suggested family outcomes foreach are displayed in Tables 1-3. We recog-nize that changes have been made in some ofthese frameworks (e.g., the Park et al., 2003framework was modified in a more recent

publication by Summers et al., 2005); how-ever, the tables describe the frameworks as

they were reviewed during the process of

developing the recommended outcomes re-

ported in this article.We analyzed the 10 frameworks to de-

termine overlapping recommendations. Al-

though each framework approached familyoutcomes from slightly different perspectives,considerable overlap was evident. For exam-ple, most suggested that professionals oughtto (a) help families learn about their child,his or her disability, and things that they cando to help maximize the child’s development;(b) support families in gaining advocacyskills and confidence in their ability to seekand access services; and (c) help familiesbuild strong support networks, both formaland informal. Because of our a priori defini-tion of family outcome as a benefit occurringas a result of services, we eliminated fromfurther consideration items regarding familysatisfaction with services. A report describing

the rationale and challenges associated withdocumenting family outcomes and summa-rizing the ten frameworks was prepared asbackground material and shared with sub-sequent stakeholder groups in order to

facilitate decision-making (Bailey & Bruder,2004).We then convened a 2-day meeting of

eight prominent family researchers, referredto as our Family Technical Work Group.Based on these discussions we generated aninitial set of six family outcomes that couldpotentially be used in state and nationalevaluations of impact. We subsequentlyconvened a two-day meeting of nine stake-holders (Family Work Group), includingparents, directors of prominent parent orga-nizations, and agency administrators, to

review and provide feedback on the sixoutcomes. This discussion provided strongendorsement for five of the six outcomes,with some editing of the way they were statedand moderate endorsement of the sixth

outcome, which focused on family qualityof life. Quality of life was seen as an

important outcome but was viewed by manyas beyond the scope of early childhood

programs. For example, this group, as wellas other stakeholders, noted that manyfamilies face issues related to poverty whichcould seriously impact their quality of life inways that are beyond the capacity of aninfant, toddler, or preschool program to

address.

After revising the outcomes, conferencecalls were held with our Part C coordinators

advisory group, our Section 619 preschoolcoordinators advisory group, and the FamilyTechnical Work Group. These calls resultedin further editing of the outcomes and

confirmed concerns about whether enhanc-

ing family quality of life should be a specificoutcome for which early intervention and

preschool programs should be held account-able. After reviewing all of the suggestionsand comments, we decided not to include

quality of life as a specific outcome, butrather include it in an introductory statementasserting that enhancing family quality of lifeis an ultimate goal of early childhood



234

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services, and that the five proposed outcomescould serve as partial indicators of the extentto which that goal had been achieved. Thefive outcomes were then placed on the ECOCenter web site and individuals around thenation were invited to review and commenton the outcomes. Nearly 100 comments werereceived, most of which commented positive-ly on the overall framework. A few minorwording suggestions were made and a numberof comments indicated concerns regardingwhether the recommended outcomes should

apply to both early intervention and pre-school programs. A January 2005 meeting ofthe ECO Center National Advisory Boardprovided additional review and comment.

Recommended OutcomesThis iterative process of stakeholder inputprovided invaluable information. To illus-trate some of the changes made and theissues that arose during this process, Table 4lists the outcomes as proposed in September2004, describes selected recommendations orconcerns raised during the process of gath-ering stakeholder input. This table alsoshows the five family outcomes proposed asa result of this process.

Outcome 1: Families understand theirchild’s strengths, abilities and special needs.Although all parents must understand theirchild’s strengths, abilities, and special needs,parents of children with disabilities face

unique challenges. As most children with orat-risk for a disability display atypicalpatterns of growth and development, it mightbe more difficult for their parents to achievethis outcome. Some parents might be con-cerned about delayed attainment of impor-tant developmental milestones or the failureto learn key skills. Others might havechildren who are difficult to parent, whoexhibit unusual behaviors, or have behaviorproblems. Children with disabilities oftenhave special risk factors, health problems,conditions, or diagnoses that force parents tolearn new information about such topics asgenetics, medications, surgeries, seizures, oradaptive technology. Research consistentlyindicates that information is the most com-

monly expressed need by parents of youngchildren with disabilities (Bailey & Powell,2005). Professionals can provide informationfor families and can help families learn newways to access this information themselves.

Information is empowering, helping parentsunderstand their child’s abilities and specialneeds so that they can interact with theirchild in ways that maximize development andlearning. Achieving this outcome also pro-vides the foundation by which parents canadvocate more effectively for their children(see proposed Outcome 2).A few examples of evidence that this out-

come has been achieved occur when families:

~ Know expectations for typical develop-ment at different ages and stages

~ Are aware of how their child is developing,and what might be the next developmentalabilities that could be encouraged

~ Are able to observe their child’s behaviorand notice whether changes occur as a resultof services, medication, changes in parent-ing, or alterations in the home environment

~ Know about the special risk factors,conditions, or disability their child mighthave

~ Know how to access information about

child development or special needs throughresources such as other parents, readingmaterials, professionals, or the Internet

Outcome 2: Families know their rights andadvocate effectively for their children. Fed-

eral legislation makes it clear that parents havea set of rights with regard to assent and accessto services. For many parents, however, entryinto early intervention or preschool programscoincides with the discovery that their childhas or is at risk for a disabling condition. Mostparents of very young children are not familiarwith the programs offered under IDEA, havehad little experience with specialists, and

might not be aware of their rights and

responsibilities. Services might be providedby many different providers and understand-ing the range of possibilities can be a dauntingtask. Parents will vary in their comfort and

confidence in participating in team meetings,



243

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seeking out services, or advocating on behalfof their child.A few examples of evidence that this out-


. Know their rights and responsibilities re-lated to service provision

. Know different service options and the typesof services offered by different providers

* Feel comfortable talking with professionalsor asking questions

. Know how to use the Internet or othersources to find out about rights and services

. Are able to participate effectively in teammeetings to plan goals and services

. Advocate for services they feel are impor-tant

. Know what to do if they feel that neededservices are not being provided

Outcome 3: Families help their children

develop and learn. Having a child with

special needs can challenge parents’ confi-dence and competence. Such factors as

challenging behavior, difficult-to-read com-munication attempts, impaired learning, mo-tor deficits, sensory impairments, specialhealth care needs, or difficulties in eating orsleeping mean that parents often must alterthe home environment or parenting beha-viors to accommodate their child’s specialneeds. From its inception, one of the statedgoals of Part C of IDEA has been to

&dquo;enhance the capacity of families to meet

the special needs of their infants and tod-dlers&dquo; (P.L. 99-457, 1986, Sec 671).

Examples of evidence that this outcomehas been achieved occur when families:

* Know and use styles of effective parenting. Provide a nurturing and stimulating envi-ronment for their child

. Use effective techniques to enhance learn-ing or manage special behavior problems

. Adapt the home environment or routinesto reflect their child’s learning style or

needs. Know about and help their child use

special adaptive equipment. Know how to access and evaluate the

validity of recommendations for dealing

with particular learning or behavior chal-lenges

Outcome 4: Families have support systems.Families sometimes might feel very alone indealing with the fact that they have a childwith a disability. They might not have anyonethey feel comfortable talking to about theirchild. Their child’s disability might precludethem from enjoying or participating in

neighborhood activities, going out with

friends, family reunions, or family holidayactivities. For some, the daily challenges andpressures of raising a child with a disabilitycan result in pessimism, anger, anxiety, guilt,stress, despair, or depression. Sometimes

support is needed from professionals to getthrough these difficult periods, but researchalso shows the important role of informalsupport in positive coping (e.g., Thompson,Lobb, Elling, Herman, Jurkiewicz, & Hulleza,1997). Using family-centered help-givingpractices in early intervention programs canhelp families build and use informal supportsystems (Dunst, 1999).A few examples of evidence that this out-


~ Feel supported in raising their children~ Maintain friendships and make new friends~ Are able to talk to friends and neighborsabout disability-related issues

~ Are able to participate in desired activitieswith family or friends

~ Meet and get to know other families ofchildren with disabilities

~ Have neighbors, friends, or family who canserve as trusted babysitters

Outcome S: Families access desired ser-

vices, programs, and activities in their com-

munity. Most families need and choose totake advantage of a wide range of commu-nity resources, services, programs, and activ-ities. These resources could include the

medical community, child care, religiousinstitutions, libraries, recreational centers,and, for older children, programs such as

sports or scouting. The community resourcesthat are used depend on the age of the child,the child’s needs, the family’s desire to



245

participate in those activities, and what is

available in the community in which theylive. Families vary considerably in their

priorities and abilities to use communityresources with their child.

Families of children with disabilities often

experience challenges in accessing communi-ty resources, especially those that seem

responsive to their needs and those of theirchildren. For example, finding appropriatechildcare or playgroup can be a problem fora parent whose child has seizures, is blind,has special feeding needs, takes medication,has behavior problems, or experiences any ofthe many other possible consequences of

having a disability (Booth-LaForce & Kelly,2004). Having a nursery that will provideappropriate care during religious services

might be very important to a family in whichattendance at religious services is a central

part of their lives. Some doctors or dentists

might not be as receptive to caring forchildren with disabilities as others.A few examples of evidence that this out-


~ Have quality childcare so that parents canwork or children can have opportunitiesfor inclusive experiences with other chil-dren who do not have disabilities

~ Have a physician and dentist who can

provide care that is sensitive and respon-sive to their child’s special needs

~ Have acceptable and trusted respite careservices when informal care is not available

~ Are able to participate in religious, recre-ational or educational groups that the

family ordinarily would have participatedin had their child not had a disability

~ Participate in parent organizations or

support groups relevant to their child’s

disability and their family’s style and

priorities

S UBSEQ UENT DEVELOPMENTS,ISSUES, AND CHALLENGES

In February of 2005, the ECO Center sub-mitted these recommendations to the Officeof Special Education Programs (OSEP) at

the United States Department of Educationfor consideration. OSEP is requiring Part Cprograms to report on the percent of familieswho report that early intervention programshave helped the family (a) know their rights;(b) effectively communicate their children’sneeds; and (c) help their children develop andlearn. OSEP is requiring Part B, 619 pre-school programs to report the one familyoutcome, which is the same for all children

participating in special education: the percentof families who report that schools facilitated

parent involvement as a means of improvingservices and results for children with dis-

abilities. The ECO center responded to theserecommendations in May of 2005 with twomajor concerns: (a) the reporting require-ments are satisfaction items, not statementsof outcomes in the way we have defined

outcomes (benefit experienced by families asa result of services provided); and (b) thereporting requirements only partially reflectthe extensive input from the field regardingthe range of desired family outcomeS2. OSEPacknowledges these concerns and has en-

couraged the ECO center to continue its

work on the full range of family outcomes,shifting our focus to helping states identifyways to measure all of the recommended

outcomes, not just those required by OSEP.Agreeing on broad family outcomes is

only the first step in determining whetherthose outcomes have indeed been achieved.Several key issues remain unresolved.

Should a similar set of family outcomes beexpected for both early intervention and pre-school special education programs? Federal

legislation for infants and toddlers with

disabilities differs from legislation concerningpreschoolers, although both include severalrelated services for families. Nonetheless,a fundamental issue will be whether real or

perceived legislative differences will deter-mine the nature and extent of family out-comes to be assessed. Some stakeholders

(typically individuals working in or respon-sible for Part B Section 619 programs) argued

2 The text of the ECO center response to OSEP can befound at www.the-eco-center.org



246

that preschool programs are not required toprovide family services (despite the relatedservice descriptions), and thus they are lessaccountable for attaining family outcomes.The way that services are currently structuredfor preschoolers often reduces the potentialcontacts professionals have with families andthus minimizes the likelihood of impact onfamilies. Others, especially parents, arguednot only that regulatory support for workingwith families of preschoolers does indeed

exist, but also that regulations should not bethe only factor in determining whether familyoutcomes are desirable. As a result of these

differing perspectives, ECO recommendedthat the government request from Part C

programs information on the extent to whichOutcomes 1-5 have been attained, and thatPart B 619 programs be expected to provideinformation on Outcomes 1-3.

In the future, however, it is likely that thisdebate will transcend the age parameters ofPart C and Part B programs, as some Part C

providers are concerned about expectationsto achieve all five outcomes and some Part B

providers readily endorse all. Many willmake the case that family outcomes are

important throughout the lifespan of indi-viduals with disabilities.How should family outcomes be documen-

ted ? Once family outcomes are determined,measurement strategies will be needed to

determine the extent to which outcomes areachieved. Unfortunately the field suffers froma dearth of measurement tools to assess familyoutcomes. As a result, existing tools can

sometimes determine which outcomes will be

assessed, rather than the outcomes themselvesdriving decisions about measurement.

Traditional concepts of reliability and

validity of scores suggest that the best wayto document individual change is throughrepeated assessments using standardized pro-cedures to determine accurately skill level orperformance. Nonetheless, most family out-come assessments have relied heavily on

parent perspectives of the extent to whichcertain outcomes have occurred. A funda-mental issue is how to provide objective,cost-effective evidence of the attainment of

family outcomes, yet be sensitive to the

perceptual nature of many outcomes. Re-search is needed to determine the relative

utility of assessment strategies from differingrespondents, different perspectives, and usingvarying measurement methodologies. Ulti-

mately, the measurement strategies used willneed to be acceptable to families, unobtru-sive, and useful for the purposes intended

(Henderson, Aydlett, & Bailey, 1993). It alsomust be a process that is acceptable to

practitioners and those who will requestand use the data.How can we establish a common set of

outcomes that apply to all families? Funda-mental to special education philosophy is theneed to individualize services. A systembased on the premise of individualizationposes challenges to evaluating outcomes forboth children and families. How can a systemdesigned to document family outcomes ac-commodate the wide range of individualized,situation-specific outcomes likely to be iden-tified by families? Moreover, it is likely that,for some families, no family outcomes mightbe identified; whereas for other families,family support might constitute the primaryfocus of the services in which they are

interested. Our work has proceeded underthe assumption that it is possible to developa core set of outcomes that apply to allfamilies. Ideally, an accountability systemwould document both the extent to whichcommon outcomes are attained, as well asthe extent to which individualized goals areachieved. The identification of a common setof outcomes does not diminish the impor-tance of developing and documenting the

achievement of individualized goals.What are the best ways to document

changes in family outcomes over time?

Child outcome assessment typically rests onan assumption of a developmental model ofskill acquisition. Children learn new skills

over time, and measurement strategies havebeen devised that reflect development in

a relatively linear fashion. Normative datain the form of growth curves or standardizedscores can be used to document change overtime and to determine the extent to which the



247

development of children with disabilities

approximates &dquo;normal&dquo; development (e.g.,Bailey, Hatton, & Skinner, 1998). Manyfamily outcomes, however, might not be

developmental in nature (i.e., there mightnot be a natural progression of change overtime that always moves &dquo;forward&dquo;). In fact,some have described the cyclical nature offamily challenges and adaptation at differentpoints of child and family development. Thismeans that the timing of family assessmentwill be critical and could influence the extentto which outcomes are considered attained.

For example, families might feel less confi-dent when they transition from Part C toPart B services than when they are firmlyconnected to either program. Furthermore,few family measures have extensive norma-tive data or growth curves that could be usedas a reference point for evaluating change. Infact, concepts of what a &dquo;normal&dquo; family isor what constitutes appropriate adaptationare likely to be challenged both within andacross cultural and ethnic boundaries, fur-ther complicating attempts to document

change over time.

CONCL USION

Drawing on the best available research

literature, federal legislation, and the inputof numerous stakeholders, we propose fivefamily outcomes for early childhood pro-

grams, derived from an extensive review ofthe literature and a set of interactions with

researchers, parents, program administra-

tors, and policy makers. We argue that

family outcomes should be documented asa measure of program effectiveness becauseof (a) the integral linkages between childrenand families, especially during the earlyyears; (b) federal legislative requirements,both direct and implicit; and (c) research

showing the potential of interventions to helpparents support their child’s developmentand promote positive adaptation amongfamily members. But despite these argumentsand general consensus in the field regardingthe importance of working with families, weanticipate initially limited acceptance of the

premise that documenting family outcomesconstitutes a necessary component of evalua-tions of early intervention and preschoolprograms, for two primary reasons.

First is the belief held by many practi-tioners, program administrators, and policy-makers that the primary purpose of servicesis to support children’s development andlearning. According to this argument, workwith families must be done with appropriatesensitivity and attention to family rights anddiversity, but is justified primarily on theextent to which it helps further children’s

learning. The limited focus of Part C on

family outcomes that enhance child develop-ment and the failure of Part B to explicitlyaddress family outcomes for preschool pro-grams reinforce these beliefs and make

broadening support for accountability for

family outcomes a difficult task.Second, is the perception held by many

researchers and policy makers that no matterhow you approach it, family outcomes in-herently represent &dquo;soft&dquo; data. According tothis argument, family outcomes are impossi-ble to measure objectively; thus any assess-ment that asks families to report outcomesattained is hopelessly constrained by highlevels of family satisfaction with services foryoung children and a tendency to rate

outcomes positively due to lack of experiencewith alternative forms of services, tremen-dous appreciation that any services have beenprovided, and in some cases a fear that

reporting less-than-optimal outcomes mightthreaten future support for early interventionand preschool programs.

Despite these concerns, we assert that

documenting benefit to children constitutesa necessary but insufficient assessment of the

accomplishments of early intervention andpreschool programs. In an era of evidence-based practices in special education (Odom,Brantlinger, Gersten, Horner, Thompson, &

Harris, 2005), we argue that families shouldbe both beneficiaries and consumers of

services. Accountability thus must go beyondproviding required services and documentingquality practices with families, ultimately toask whether those services result in measur-



248

able outcomes for families (Bailey, 2001).The outcomes proposed here reflect the

potential of high quality early childhood

programs to benefit families. They will pro-vide a basis for instrument development,research, and program evaluation as theECO Center moves into the next stages ofits work. Hopefully they will stimulatefurther reflections on the nature and sub-stance of services provided, and the criticalrole of families vis-d-vis the ultimate intent of

early childhood programs.

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This article was developed under a cooperativeagreement (#H324L030002) to SRI Internationalfrom the Office of Special Education Programs,U.S. Department of Education. The content,however, does not necessarily represent the policyof the Department of Education and you should notassume endorsement by the federal government.

The ECO Center is a collaborative effort of SRIInternational, the Frank Porter Graham Child

Development Institute at the University of NorthCarolina at Chapel Hill, the Juniper Garden’sChildren’s Project at the University of Kansas, theNational Association of State Directors of SpecialEducation (NASDSE), the University of Connecti-cut, and RTI International.

The outcomes presented in this paper were de-

veloped through a year-long consensus-buildingprocess that involved the input and review fromnumerous stakeholders including federal, state,and local policy makers and administrators, local

providers, family members of children with dis-

abilities, and researchers. We would like to

acknowledge the critical contribution of those whoprovided input to the development of these out-

comes. We especially acknowledge the contri-

bution of our ECO work group members in-

cluding those from our family technical work

group, family member work group, Part C workgroup, and 619 work group who contributed so

generously of their time in the development of theseoutcomes.

Correspondence regarding this article should beaddressed to Don Bailey, RTI International, 3040Cornwallis Road, Research Triangle Park, NC27709-2194. E-mail: [email protected]



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