Linking Models of Disability for Children with Developmental

Linking Modelsof Disability for Children

with Developmental Disabilities

John C. BricoutShirley L. Porterfield

Colleen M. TraceyMatthew O. Howard

ABSTRACT. Children with disabilities, their families, and the socialworkers who provide services are faced with navigating complex socialand institutional environments in their quest for developmental, educa-tional and daily living supports. Models of disabilities provide conceptualframeworks for understanding and action that can inform the deci-sion-making process of parents and social workers. A new ecologicalmodel of disability, the systems model, is proposed that integrates themedical model, focused on individual deficits, the social model, focused

John C. Bricout, PhD, is Assistant Professor, George Warren Brown School of So-cial Work, Washington University in St. Louis, Campus Box 1196, One BrookingsDrive, St. Louis, MO 63130 (E-mail: [email protected]).

Shirley L. Porterfield, PhD, is Assistant Professor, Department of Social Work,University of Missouri-St. Louis, College of Arts and Sciences, 8001 Natural BridgeRoad, St. Louis, MO 63121 (E-mail: [email protected]).

Colleen M. Tracey, MSW, PhD Student, George Warren Brown School of SocialWork, Washington University in St. Louis, Campus Box 1196, One Brookings Drive,St. Louis, MO 63130 (E-mail: [email protected]).

Matthew O. Howard, PhD, is Associate Professor, George Warren Brown School ofSocial Work, Washington University in St. Louis, Campus Box 1196, One BrookingsDrive, St. Louis, MO 63130 (E-mail: [email protected]).

The authors gratefully acknowledge the support of the Mental Health Services Re-search Center and the Comorbidity and Additions Center at Washington University.

Journal of Social Work in Disability & Rehabilitation, Vol. 3(4) 2004http://www.haworthpress.com/web/JSWDR

© 2004 by The Haworth Press, Inc. All rights reserved.Digital Object Identifier: 10.1300/J198v03n04_04 45

http://www.haworthpress.com/web/JSWDR

on disabling social environments, and the transactional model, focused onperson-environment interactions. Diagnostic, institutional, and practice im-plications of the new model are discussed. [Article copies available for a feefrom The Haworth Document Delivery Service: 1-800-HAWORTH. E-mail address:<[email protected]> Website: <http://www.HaworthPress.com>© 2004 by The Haworth Press, Inc. All rights reserved.]

KEYWORDS. Disability models, ecological, children, systems

Children with a disability may be described as a “minority within aminority” (Munn, 1997) who face unique challenges because of theirstatus as dependents and the special needs of both child and family.These challenges stem from the child’s impairments and related devel-opmental challenges, on the one hand, and inadequate social servicesand societal barriers, on the other (Brett, 2002; Dowling & Dolan, 2001;Ellis, Luiselli, Amirault, Byrne, O’Malley-Cannon, Taras, Wolonge-vicz, & Sisson, 2002). The challenges that children with a developmen-tal disability and their social workers confront require integrated ser-vices and dynamic multilevel interventions that support both child andfamily (Heiman, 2002; Middleton, 1998; Reiter, 2000; Ward, 1999).However, social services and intervention programs are often based onrelatively simplistic assumptions regarding the experience of disabilityand its consequences for children with disabilities and their families(Brett, 2002; Middleton, 1998; Reiter, 2000). These assumptions canbest be understood in the context of models of disability.

MODELS OF DISABILITY

Models of disability can provide social workers with the basis for asystematic approach to understanding the causes and contexts of dis-ability (Imrie, 1997). As the lens through which a child’s disability iscomprehended, models of disability selectively bring into focus somefactors to the exclusion of others (Fougeyrollas & Beauregard, 2001).This suggests a strategic use of models by social workers, dependingupon the salient challenges facing the child in the context of his or herage, developmental disability type, and social environment.

Models of disability have generally been used to illuminate theexperiences and goals of disabled adults (e.g., Marks, 1997a, 1997b).

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These experiences and goals may be quite different than those envi-sioned for their children by parents of children with disabilities. Most ofthese parents are not themselves disabled, have little or no knowledge ofthe “disability community,” and certainly begin the process of parentinga child with a disability through interaction with the medical health caresystem. Parents enter the medical health care system with the intentionof “fixing” their child, at least to the extent possible. Over time, as par-ents gain knowledge and come to realize that many disabilities are life-long, this goal shifts from a medical intervention focus to an adaptiveenvironment focus.

The role that models of disability can play, over time, in providing boththeoretical and practical support for the interventions and services chosenby parents in consultation with social workers and other professionals forchildren with developmental disabilities are examined in this paper. Inaddition, we discuss some of the implications of models of disability fordiagnosis of developmental disabilities and for educational and healthpolicy. The term “developmental disability” is often used as a pseudonymfor mental retardation, but in fact its definition is broader. Developmentaldisabilities have been defined by the federal Developmental DisabilitiesAssistance Bill of Rights Act (P.L. 101-496, section 102, 1990) and in-clude conditions such as autism, cerebral palsy, hearing impairment, andvision impairment as well as mental retardation.

Models of disability refer to frameworks for understanding the causesof disability and, by implication, the means to ameliorate them (Altman,2001). For children with a disability, their families and social workers,the stakes in the choice of intervention program (and therefore, disabilitymodel) are very high. Developmental disabilities challenge the resourcesof child, family and community with multidimensional and developmen-tal stage-sensitive needs. Successfully addressing such needs requires a co-herent plan or vision of the kind that a model of disability can provide byindicating which facets of the situation are important, how they fit together,and how an optimal outcome might be achieved. Models of disability implic-itly describe not only the disability, but also those conditions under which thenegative effects of disability on functioning are attenuated. Thus, differentmodels of disability imply different intervention approaches; no singlemodel provides an adequate basis for the entire spectrum of intervention ap-proaches. However, the path toward lessening the impact of disabilityimplicit in each model also bears a unique, and necessarily limited,

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stamp. These limitations argue for the strategic use of models as tools,rather than as stand-alone road maps for action.

Unfortunately, parents often choose an intervention for their childwithout a clear understanding of the model on which the intervention isbased. A better understanding of the disability model underlying mostinterventions would doubtless improve both the decision-making ca-pacity of parents and social workers and the design of interventions byproviders. There are four major models of disability of particular utilityfor children with a disability, their social workers, and service provid-ers: the medical model, the social model, the transactional model, andthe ecological or systems model. Each model will be discussed in appli-cation to the issues facing children with disabilities and their socialworkers.

THE MEDICAL MODEL

The medical model of disability is probably the most influential and perva-sive model today (e.g., Gregory, 1997; Imrie, 1997; Llewellyn & Hogan,2000) due to the power and prestige of the medical professionals, insurers andinstitutions on whose perspectives, expertise and influence the medical modelis based. The medical model couches disability in context of pathology andimpairment (e.g., sensory, neurological, cognitive) from a trauma or diseaseprocess (Danforth, 2001; Hughes & Patterson, 1997). The medical model issometimes cast as devaluing or dehumanizing because of the focus on defi-ciencies (Imrie, 1997; Bax, 1998). However, a more thorough examination ofthe medical model in its application to advocacy for children with a disability iswarranted if the limitations are to be meaningfully assessed in this context.

The medical model assumes that the impairment arises from symp- tomsdue to a disorder, syndrome, disease, or condition that is subsequently cate-gorized and classified. Prevention, treatment, and management of diseaseprocesses and traumas in service of reducing or eliminating the pathol-ogy associated with disability, as well as secondary conditions, are itsgoals (Drake, 2001). Interventions based on this model have much tocommend them from the standpoint of the child with a disability and hisor her social workers. For example, strength training in a child with aprimary disability of cerebral palsy will likely decrease the physicalchallenges faced by that child at each developmental stage (Damiano &Abel, 1998). Meanwhile, by choosing an intervention that lessens theimpact of the child’s disability, the family may, over the long run, have


more available affective and material resources than it would otherwisehave. In addition, the capacities and potential outcomes for the childhave been enhanced.

Despite these advantages, a disability model that is grounded in thediagnosis of individual pathology provides a useful framework for in-tervention only to the extent to which there is some indication of under-lying pathogenic process. With developmental disabilities this is notalways the case. Some developmental disabilities, such as mental retar-dation resulting from identifiable genetic anomalies (e.g., Down’s syn-drome or Fragile X syndrome) are based on a clearly measurablemedical diagnostic procedure. Others, such as autism spectrum disor-ders, are based on observation of behavioral attributes of the child whilein a clinical setting, and often result in an unclear or tentative diagnosis.For many developmental disabilities, even when a clear medical diag-nosis is established, there is no single, demonstrably effective medicalintervention to alleviate the cause or the symptoms of the disability.Thus, parents often have a diagnosis but don’t know what to do next.

These examples raise the important issue of adaptation to disability,which brings into focus the interaction between the person and environ-ment as each evolves over time. The medical model is particularly un-suited to considerations of person-environment interaction as factorsactively shaping disability (Fougeyrollas & Beauregard, 2001). Dis-ability in this context extends beyond the condition of disability to en-compass the experience and consequences of disability, both of whichare intimately tied to another concept–“functioning,” or, what the indi-vidual is able to do irrespective of diagnosis. The distinction betweenlevel of functioning and diagnosis is not a trivial one for several reasons.First, some studies have shown that diagnosis may not be the best pre-dictor of functioning for people with a disability (Pelkonen, Marttunen,Pulkkinen, Laipppala, Loennigvist, & Aro, 1998; Simeonesson, Bailey,Smith, & Buysse, 1995). Furthermore, as Ustun, Chatterji, and Rehm(1998) point out, diagnosis is not a good predictor of service need–rather, functioning mediates the impact of diagnosis on need. “(T)hemissing link between diagnosis and need is functioning” (Ustun et al.,1998, p.1146). This observation is particularly true for children with de-velopmental disabilities. Developmental disabilities tend to be “spec-trum disorders” in that functional impairment may range from mild tosevere for children with identical medical diagnoses. Even within themild category, the functional abilities of children may be differentiallyimpaired. This means that a child’s physical or psychological func-tioning, as well as his or her social functioning at home or school,

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will directly affect that child’s self-perceived needs, as well as the per-ceptions of parents, siblings, teachers, or peers vis-à-vis the child’sneeds. Another model of disability, the social model, takes functioninginto consideration and provides a framework for understanding how thesocial environment has an impact on functioning and, consequently,service needs.

THE SOCIAL MODEL

The social model of disability posits that disability is a social con-struction, which is to say that society creates “disability” by imposinghindrances to the full participation of persons with different abilities(Hughes & Patterson, 1997; Harris, 2000; Swain & French, 2000).Such hindrances include negative attitudes, physical impediments,and institutional, communication, and social barriers. In the socialmodel, disability is differentiated from impairment by exclusionarysocietal practices that isolate and stigmatize individuals with a dis-ability (Goodley, 1997; Hughes & Patterson, 1997). This modeladopts a civil rights perspective on the social and civic participation ofpersons with a disability (Marks, 1997a, 1997b; Munn, 1997). Theterm “minority model of disability” may be used interchangeably with“social model of disability.” The term “minority model” underscoreshow civil rights, to offset the pernicious social construction of disabil-ity rest on minority status-based legal protections (e.g., Batavia &Schriner, 2001; Schriner & Batavia 2001; Scotch & Schriner, 1997).The social, or minority, model of disability thus reflects the value basethat undergirds the Americans With Disabilities Act (ADA), the Reha-bilitation Act (Rehab Act), and the Individuals with Disabilities Edu-cation Act (IDEA), all of which trace their moral precepts and anti-discrimination language to title VII of the Civil Rights Act of 1964prohibiting discrimination on the basis of race (Batavia & Schriner,2001; Danforth, 2001). Proponents of the social model of disabilityobserve that society unjustly privileges certain appearances, levels offunctioning or needs as “normal” over others, resulting in social ex-clusion as well as economic and political marginalization (e.g., Imrie,1997; Dowling & Dolan, 2001). Those who do not conform to the be-haviors, needs or aesthetics expected of nondisabled people aretreated as inferior and considered to have a subnormal status.

Similarly, society weighs the rights of the individual and the respon-sibilities of the community differently depending on the consequences


to the dominant, nondisabled group. For example, a school district mayfund counseling for several families following an incident of wide-spread school violence but refuse to fund counseling for a family whosechild has just suffered an acute head injury. This difference in resourceallocation is paradoxical; both events disrupt family functioning and re-quire additional supports, but only one, school violence, is deemed wor-thy of scarce counseling resources. In the first case, school violence isconsidered to be a “community concern,” whereas in the second case,disablement is considered to be a “family concern” and, subsequently,ineligible for community funds.

Within this framework, the appropriate accommodations needed forpersons with disabilities to participate fully in society are recast asrights (Asch, 2001). In practice, however, the boundaries of such rightshave been the subject of heated debates when public and private entitieshave been challenged with costly alterations to standard practices orservices. For young children with a disability, this debate may takeshape when mainstreaming children diagnosed with cerebral palsy orDown’s syndrome requires additional teacher training and a teacher’saide for every integrated classroom.

The social model puts the accommodation needs of children with adisability on an equal footing with those of their nondisabled peers(Ravaud & Stiker, 2001). The social model also recognizes the impor-tance of the institutional (e.g., educational system), social and politicalenvironment in facilitating or impeding conditions that vouchsafe suchrights (Barton & Armstrong, 2001). Perhaps even more than the medi-cal model, the social model requires the knowledge and participation ofparents and social workers in order to craft an appropriate, child-spe-cific intervention for each child with a disability. The federal govern-ment acknowledged the importance of informed parental input into theintervention process when it included a mandate for state-sponsoredparent training organizations in the IDEA.

The social model permits consideration of social class, ethnic- andcultural-based biases and discrimination. Thus, the unique barriers toinformation faced by members of racial and ethnic minorities (childrenand parents) can be taken into account, even when their impact is uponthe quality of medical care, ostensibly the domain of the medical model,but foreign to the disease focus of that model. In fact, members of racialand ethnic minorities may not receive the services they need(Brookings, 1993; Sloper, 1999). Moreover, differences in physicalhealth and in the incidence of disability between White Americans and

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African-Americans, Hispanic-Americans and American Indians beginat birth (Brookings, 1993).

Disparities in access to care, service provider lack of familiarity withethnic minority cultural beliefs, and cultural barriers to understandingincrease risk factors for aggravating the condition and consequences ofdevelopmental disabilities over the life span (Brookings, 1993). Fami-lies with disabilities tend to have greater financial need than other fami-lies (Sloper, 1999; Porterfield, 2002), a critical factor relevant to theequitable receipt of services. This is a factor that the social model makesparticularly salient to social workers. Thus, the social model can add aneeded dimension to the treatments and services that are usuallythought of as the exclusive purview of the medical model. Just as themedical model emphasizes prevention and timely remedial interven-tion, the social model espouses proactive measures to anticipate and re-duce barriers to full participation in the institutional, social and politicalenvironment as the young child transitions from home to preschool andpreschool to school environments. The social model complements themicro (individual) focus of the medical model with a macro-level per-spective. Unfortunately, neither the medical nor the social models prop-erly account for the meso-level activities that mediate both the effects ofphysiological or psychological impairments and the effects of institu-tional policies or practices.

THE TRANSACTIONAL MODEL

At the meso level where children with disabilities and their familiesinteract with institutions such as schools and social service agencies,transpersonal factors, such as interpersonal, family, and organizationaldynamics influences the child’s quality of life (Ferguson, 2001). Thetransactional model provides a framework for conceptualizing howthese dynamics affect the experience of disability, for the child and hisor her support system (Llewellyn & Hogan, 2000). The transactionalmodel posits multiple feedback loops between the behavioral patterns,beliefs and emotional reactions of the child with a disability and his orher immediate social environment. Thus, it takes into account the wayin which the interactions between a child with an autism spectrum disor-der and her parents produce reciprocal responses that shape the child’sself-presentation and self-esteem with clear implications for the child’sexperience of disability when she or he enters the school environment.Applied Behavioral Analysis (ABA) or Lovaas therapy is (though per-


haps not purposefully) congruent with the transactional model(Lovaas & Smith, 1989; Cattell-Gordon, 1998). These intensive meth-ods of intervention train children, who are otherwise oblivious to socialcues, explicitly how to act appropriately in each social setting throughtechniques such as role-playing and social stories (Gray, 1998). Thechild’s response to behavioral management techniques, as well as themanner in which the parent or therapist uses those techniques, will haveprofound implications for the teacher’s use of such techniques in theclassroom context. The parent-child interaction will also influence thechild’s self-presentation with implications for the initial impression ofthe child by both teacher and classmates, and for the tenor of subsequentinteractions of the child with them. Hence, the transactional model ofdisability views the interactions between the child and his or her socialenvironment rather like ripples spreading across a pond; reinforcing orinterfering with important growth processes and thus altering the per-ceived impact and experience of disability. It is complimentary to boththe medical and social models–inasmuch as psychology and physiologyaffect behavior, cognition, and emotion, so too does society through themechanisms of socialization and social cognitions such as stereotypes.However, the transactional model’s emphasis upon “reciprocal rela-tions” can lead to false assumptions about putatively equal influence onthe part of individual and society. It fails to consider the power of soci-ety through moral and legal sanctions, and the distribution of informa-tion and resources, to shape the agenda and the context in which trans-personal transactions take place.

PUTTING IT ALL TOGETHER: THE SYSTEMS MODEL

In order to consider all three elements–individual (medical model),societal (social model), and transpersonal (transactional model)–simul-taneously, an ecological approach is required. In their search for ecolog-ically valid models of disability for research and clinical applicationswith children, Llewellyn and Hogan (2000) suggest a “systems analy-sis” model guided by Bronfenbrenner’s (1992) process-person-contextmodel. Bronfenbrenner’s model attributes individual characteristics tothe joint effect of personal traits and environmental factors over the lifespan. Bronfenbrenner’s ecological or systems theory was based uponthe earlier work of Kurt Lewin (1947), who devised the Field Theoryapproaches to human behavior. Lewin observed that explaining human

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behavior by reference to the action of the human psyche acting aloneconstituted an unwarranted solipsism:

. . . behavior could not adequately be understood simply in terms ofcognitive structures, wishes, and expectations, and that some waywould have to be found for dealing with the constraints, opportuni-ties, resources, and pressures that originate in the social, political,and technological environment. (Cartwright, 1978, in Schwartz,1993, p. 267)

The basis of Lewin’s Field Theory posited a “life space” at the inter-section of person and environment. This “life space” was the “region,”partly accessible and partly not, in which the individual interacted withhis or her environment and structured the individual’s psychological ex-perience. Thus, Field Theory placed outcomes in the context of a struc-ture and process.

Bronfenbrenner added another dimension to Lewin’s Field Theory:change over time. Whereas Lewin insisted that person-environment in-teraction research focus on a snapshot in time, Bronfenbrenner was in-terested in the changing interaction over time, for which he introducedthe concept of “chronosystem” (Berry, 1995). Although he supportedthe application of Field Theory to macro-level environments, Lewinwas focused chiefly on individual behavior as shaped by small groupsocial interactions, rather than on larger social problems (Gold, 1992).Bronfenbrenner, by contrast, devoted his energies to developing aframework suitable for conceptualizing the environment in concentriccircles of influence from its most proximal relationship with the indi-vidual to its most distal, and in-between. Specifically, Bronfenbrennerconceived of person-environment interactions as nested structures spa-tially arranged by their distance from the individual. He began with themost proximal structure, the microsystem (e.g., family), then describedthe mesosystem (e.g., direct relationships such as neighbors), followedby the exosystem (e.g., indirect relationships such as school systems),and finally considered the most distal structure, the macrosystem (e.g.,overarching influence systems such as cultural influences).

The strength of ecological or systems models of disability is that theyput the child with a disability in the context of an environment that canproduce developmental changes (Llewellyn & Hogan, 2000). For ex-ample, a peer support group or a “circle of friends” can provide a bufferbetween the child and her environment, helping the child to negotiatedifficult situations and providing a context for social interaction. These


are the peers who think of the child as a friend rather than someone witha label (Gold, 1994; Taylor, 1997). The chief challenge in articulating asystems model of disability is to specify its parameters. Whether guidedby Bronfenbrenner’s theory, as were Llewellyn and Hogan (2000), orby Lewin’s (1947) theory, an ecological or systems model, much likeecological theory, does not permit predictions, but rather maps out gen-eral relationships.

DIAGNOSTIC ISSUES

The diagnostic criteria for developmental disabilities vary by coun-try. In the United States they are found in two separate diagnostic manuals,the World Health Organization’s International Statistical Classification ofDiseases and Related Health Problems, Tenth Revision (ICD-10), and theAmerican Psychiatric Association’s Diagnostic Statistical Manual ofMental Disorders, Fourth Edition, Text Revision (DSM-IV-TR). De-velopmental disabilities such as cerebral palsy are considered “medi-cal” disorders and are diagnosed by medical doctors according tocriteria delineated within the ICD-10; those such as autism are consid-ered “pervasive mental” disorders and are diagnosed by mental health pro-fessionals according to the criteria delineated within the DSM-IV-TR. Oneconsequence of not having a unitary or unified classification scheme is in-adequate provision of capacity building and ancillary services, such asspecial equipment, personal assistance, and social work services (Bene-dict & Farel, 2003). Another consequence is inadequate insurance cov-erage. Although there is some overlap among the roles played by var-ious medical professionals (for example, autism may be diagnosed by aneurologist or a psychiatrist/psychologist), for insurance purposes thesedisabilities tend to be covered as “medical” if the diagnosis is containedwithin the ICD-10 and as “mental health” if the diagnosis is containedwithin the DSM-IV-TR. Many insurance plans provide lower levels ofcoverage with higher co-payments or coinsurance for mental health di-agnoses than they provide for medical diagnoses (Sturm & Pacula,2000; Pacula & Sturm, 2000).

Internationally, the World Health Organization recognized the needto include environmental factors in reciprocal relation to personal fac-tors and organic systems in the design of the International Classificationof Health, Disability, and Functioning (ICF), yet they have yet to betruly integrated into the diagnostic criteria or adopted by medical pro-fessionals and social workers in the U.S. (Gray & Hendershot, 2000).

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Meanwhile, environmental and personal factors provide the context forfunctioning and personal or life activities. Body functions and struc-tures are assessed with regard to significant deviations from the norm.Activities constitute observable, culture-specific person-level tasks oractivities that are limited by the degree to which the individual has diffi-culty performing them–with or without the use of assistive technologiesor personal assistance. Participation, characterized by involvement inlife activities such as social relationships, work, social and civic life(e.g., Drake, 2001), is, by contrast, generally not included in diagnosticcriteria, and is restricted to the degree that external rules, such as socialrules limit participation. The environment includes natural, social, tech-nological, material, institutional, political, and belief-system-based fac-tors impinging on an individual’s life, and is subject to barriers andfacilitators of different degrees.

Despite its sensitivity to the multidimensional character of dis-ability, even the ICF places the individual squarely at the locus of theprocess. This has the effect of minimizing the impact of socioculturaland historical factors shaping services for children with a disabilityand their families, and puts the onus of intervention primarily on theindividual in the environment (Szymanski, 1994). Environmental inter-ventions are overlooked, beginning with the proximal care environmentof service providers and moving outward to the more distal environmentsof institutionally and nationally sanctioned policies and practices. Indeed,families as agents of socialization and social control are excluded fromindividual- focused models of intervention. Moreover, the labels andclassificatory schemes used to designate ‘disability’ may have a negativeimpact on the services and support received by children with develop-mental disabilities. Both “official” labels and classificatory schemes areinherently power laden, and shaped by the values and purposes of power-ful groups (Gregory, 1997; Syzmanski, 1994) whose interests are notthose of children with disabilities or their social workers.

INSTITUTIONAL IMPLICATIONS

Although the ICF takes a step in the direction of considering both theetiology and the functional reality of disability (e.g., Bricout, 2002)–more accurately pinpointing where on the spectrum a child with a dis-ability lies–its use conflicts with the current structure of health care pro-vision in the U.S. In point of fact, the social workers, medical pro-fessionals, educators, and service organizations that serve children with


disabilities will not provide services until a formal diagnosis (medicalor educational) has been made. Some service organizations do includeevaluation and diagnostic services, but many rely on the medical oreducational communities for these services. Diagnostic procedures arecodified into laws governing access to services from each of these insti-tutions as well as financial support through other government agencies(such as state “birth-to-three” programs, Medicaid, and social securityor supplementary security income cash assistance for the disabled).

Advocacy-minded organizations also provide skills and resourcesfor ameliorating aspects of the child’s condition and environment, suchas therapeutic skills and advocacy training for parents. These organiza-tions, perhaps more than any others, integrate the social and medicalmodels. However, the degree to which this integration takes place islimited by the scope of the organization’s purview and mission. The or-ganization’s charge and scope of activities may be circumscribed by theway that the ‘problem’ has been defined, for example, either as an issueof access to care, or in terms of denial of rights, making it difficult to ad-dress both needs and rights. Organizational change aimed at broadeningthe advocacy-minded agency’s mandate may be required to implementa systems approach, and here social workers may provide the catalystfor change (see Cherin, 2000).

PRACTICE IMPLICATIONS

The Internet. One of the most exciting developments in recent yearshas been the rapid increase of parent support groups and practice infor-mation on the Internet. The Internet serves as a medium for communica-tion, support and information. As a medium of communication andsupport, the Internet has allowed parents of children with fairly rare dis-orders, such as apraxia of speech or autism, to “chat” and learn from theexperiences of other parents (Finn, 1999; Waltz, 1999). Parents can findinformation on the nature and quality of remediation, compensatory orrehabilitative practices on the Web (Cook, Rule, & Mariger, 2003).Similarly, the Internet provides valuable information for social workersand others in the helping professions related to resources and practicesfor children with disabilities (Holden, 2002; Sabella, 1998). TheInternet can even provide information for parents of children with dis-abilities desiring so-called alternative and complementary therapiesfalling outside traditional Western allopathic therapies, such as Chinesemedicine and herbal therapy (Rosenberg & Stewart, 2002).

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For both parents and professionals vetting information on the Internetit is a critical task: a challenge to the user and a limitation of the medium(Cook et al., 2003; Holden & Rosenberg, 2003; Rosenberg & Stewart,2002). Another limitation of the Internet, its ‘inaccessibility’ to childrenwith disabilities due to a paucity of software for making both online(Web-based) and standard computer software applications responsiveto the needs of children with learning disabilities, visual and speech im-pairments, is decreasing with the creation of new programs (Amberg,2001). The ADA provides legislative impetus for making the Web ac-cessible for students with disabilities (Bricout, 2001).

Although the Internet has begun to bridge the medical-educationalgap for parents, and created additional forums for discussion amongsome groups of professionals, its use does not yet appear too wide-spread or sophisticated enough to address the dearth of communicationbetween professional groups, particularly between physicians and ser-vice providers. While the Internet has facilitated a more open dialoguebetween parents and professionals, it has yet to translate into wide-spread integration of medical and educational services. In the mean-time, a good deal of work has yet to be done in improving the quality offace-to-face dialogues between parents and professionals. Perhaps themost important part of this work at enhancing both the quality and theefficacy of the dialogue lies in creating new partnerships between socialworkers and parents, and in forging face-to-face parent support groups.

Client-Professional Partnerships. Parents and social workers can bemost effective at providing supports for a child with a disability if theyunderstand the underlying models and develop partnerships to secureecologically sound services that meet the emergent needs of developingchildren. Although medical diagnosis (e.g., medical model) is neces-sary for access to services, for most children with developmental dis-abilities there is no medical “fix” for the functional challenges faced bythe child. Developmental disabilities are, by definition, lifelong in na-ture. One can maintain flexibility and strength in a child with CP, orteach a deaf child to speak, educate a child with mental retardation, andteach appropriate social behavior to a child with an autism spectrum dis-order, but one cannot “cure” children of these disabilities, the goal of amedical model approach to disability. Thus, the medical model has aplace in the intervention process; it is not, however, a panacea.

The focus of the social worker-family partnership needs to be on pro-viding parents with the appropriate skills and knowledge to successfullyanticipate and negotiate predictable challenges arising from transitionsbetween developmental stages (Quinn, 1999). These skills and knowl-


edge empower parents to guide the child through interpretation and even-tual adaptation to their changing social environment. The partnership in-volves an iterative process of action and assessment grounded in thefamilies’ and most especially, the child’s experience of accommodations,treatments, and supports. In the context of such a partnership parents, chil-dren and their social workers are better equipped to make choices regardingaccommodations to reduce the functional limitations arising from the inter-action between the child’s disability and his or her social environment. Forinstance, a wheel chair or system of braces and canes is provided for thechild with CP, a TTY system is provided for the deaf child, and a circle offriends is initiated for the child with mental retardation or autism.

Face-to-Face Support Groups. In addition to professional-clientpartnerships, parents of children with disabilities can also become em-powered through involvement in support groups (Adesida & Foreman,1999; Solomon, Pistrang, & Barker, 2001). For example, a study of sup-port groups for parents of children with hyperkinetic disorders foundthat voluntary, facilitated groups with parent-led discussions provideduseful information, instrumental and social support (Adesida & Fore-man, 1999). As social networks support groups have a number of ad-vantages, they spread emotional burdens over a number of individuals,provide a broad repository of knowledge and experience, and alleviatethe stigma and marginalization of social isolation. In many respects,they provide a new occasional environment for parents, a prescriptive inkeeping with the social model of disability.

Adapting Persons and Environments. The social model is important,but it is not definitive. Changing the environment to fit the child (the so-cial model), while an important ideal, is often not a practical goal forchildren or their parents. Parents cannot change most social environ-ments because they lack the requisite resources and knowledge and so-cietal norms are resistant to change. Even if parents could change theirchild’s immediate environment, they may not want to because of thenegative social stigma and discrimination that the child may face for be-ing too different when s/he moves from his or her immediate environ-ment into other social settings that are less adaptable. For example, onewould expect the parent of a child with speech and language limitationsto attempt to remediate those limitations through speech and languagetherapy. The child could simply learn to communicate through sign lan-guage or through a picture exchange system (PECS), but this is a sec-ond-best solution for a child because that support may not be replicable,or even desirable as the child ages and his social environment expands.

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Although accommodations provide essential supports to the child’s abil-ity to successfully navigate her world, medical interventions are equallyimportant. Social policies play an important role in providing both re-sources and mechanisms for creating enabling environments that fosterthe full participation of children with disabilities and their families incommunity life, not as dependents, but as equal citizens (Turnbull,Beegle, & Stowe, 2001). Social workers need to be familiar with the roleof social policy to incorporate policy advocacy in their change efforts.

Targeting Social Policies. Social policies need to focus simulta-neously on the needs of children with disabilities and their families(Benedict & Farel, 2003; Turnbull et al., 2001). Such policies must befocused on the functional consequences of disability and not on the con-dition itself if the services received are to be capacity building ratherthan dependency building (Benedict & Farel, 2003; Turnbull et al.,2001). As a social policy of special import to children with disabilities,the IDEA can serve as the basis for a discussion of enhancing social pol-icies to create participation-enabling environments.

It is critical for social policies to allocate resources for services thataddress the functional consequences of the disability, rather than limitservices to those focusing on alleviating the condition as such. In orderto provide services for children with behavioral and emotional disor-ders, for example, the IDEA must target services that address not onlycognitive processing impairments to learning but also behavioral andemotional supports (DPN, 2001). The federal government does not ap-pear to be taking this approach in the IDEA Reauthorization of 2002,which focuses on resources for early reading instruction interventionsto the neglect of behavioral and mental health supports that increase thecapacity of these children to succeed at school and to eschew substanceabuse and violence (DPN, 2001). A study conducted by Turnbull,Beegle, and Stowe (2001) identified several core concepts relevant tothe current discussion of targeted social policy resource allocation. Us-ing qualitative methods in a participatory action research process thatinvolved 108 individuals including family members, policy experts andprofessionals, Turnbull et al. (2001) identified 18 core concepts, ofwhich three are germane to the conditions under which services are de-livered: (1) individualized and appropriate services, (2) classification,and (3) capacity-based services.

Policies must be crafted that make possible custom-tailored ser-vices that meet the individualized needs of families and their childrenwith disabilities, preferably in an integrated and ‘seamless’ fashion


from provider system to provider system: for example, from school towork, facilitated by IDEA-mandated transition plans (Turnbull et al.,2001). In practice, the IDEA transition plans have failed to achievetheir promise of seamless integration, although viable models maybe on the horizon (e.g., Hughes, 2001). Classification systems existin a context of limited resources, and if they are properly calibrated,can serve to protect the needs of both family and child by consideringboth the severity of the disability and family resources (Turnbull etal., 2001). As we have seen, adequate classificatory schemes formeeting the developmental and financial needs of children with dis-abilities and their families do not exist. A necessary counterweight tothe needs-based focus of the classification system is provided by ca-pacity-based services, which take into account client strengths aswell as needs, and seek overall to enlarge the capacity of both childand family (Turnbull et al., 2001). Once again, the IDEA principlesof family-directed assessment and multidisciplinary needs evalua-tions may fall short of the mark, especially for members of racial andethnic minority groups (Zhang & Katsiyannis, 2002). Social workersand other advocates must lobby for federal policy initiatives that re-flect a systems approach and capacity building orientation, particu-larly in the current political climate that is characterized by devo-lution and a shrinking commitment to more costly but necessary in-vestments in seamless social and medical services.

Challenges. Although a systems approach provides additionalbenefits by integrating aspects of both the medical and socialmodels, interventions currently available in the United States tendto focus on either the medical or the social model. Medical profes-sionals trained to diagnose the disability may not be aware of in-tervention programs based on the social model. Educationalprofessionals and public agency case managers, on the other hand,are well aware of therapeutic intervention programs grounded in asocial model perspective but may know little about more tradi-tional medical interventions. In other words, there is a disjuncturebetween the medical, social service, and educational professions.Advocacy organizations can help spearhead efforts at systemicchange aimed at integrating the social and medical models. Themedical, social services, and educational communities will alsobe important partners in realizing change at the institutional andsocietal levels.

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FUTURE DIRECTIONS

In the long run, several changes are needed to help achieve the goal ofminimizing the pernicious impacts of disability and maximizing theability of children with disabilities to successfully negotiate their envi-ronments. First, the link between medical diagnosis and resources avail-able to support treatment needs to be more clearly identified anddeveloped. In support of this goal it will be important to conduct popu-lation-specific, empirical research. The aim of such research would beto create post-diagnosis intervention guidelines appropriate to thechild’s age, medical diagnosis, level of functioning, and family re-sources. A mechanism for linking these guidelines and the resourcesavailable to people with disabilities and their families needs to be devel-oped. We envision a computer-mediated interactive decision-makingtree, perhaps available on the Internet. This interactive system wouldconstitute a guide for the user who could navigate through state and lo-cal area-specific information regarding treatment, advocacy, and bothpublic and private funding resources. User input would be solicited onimproving both the substantive content of the guide and the software ap-plications.

Second, low-cost, high-quality education programs explaining themajor models of disability and their implications for professional prac-tice, advocacy, and familial problem solving should be made availableto service providers, social workers, and parents. The programmingcontent and delivery would be tailored to the intended audience withdistinct versions for parents and professionals. Such programs could be‘modular’ in format and readily disseminated using hard copy and com-puter-mediated media, such as compact discs, DVDs, or Web pages.Participant feedback on the relevance, utility and content of the educa-tional programs would be part of an ongoing process of evaluation andmodification.

Third, online or face-to-face forums where social workers, parents,and professionals can discuss these issues in a less formal setting wouldhelp to disseminate cutting-edge medical, therapeutic intervention, andpublic policy research between these groups. These forums should ariseout of partnerships between advocacy groups, parents, social workers,and medical professionals. The common thread running through theproposed strategies is a prominent role for participant feedback, whichis then integrated into the development and implementation of servicesand interventions (e.g., Brett, 2002; Dowling & Dolan, 2001; Heiman,2002).


CONCLUSION

Improving the “fit” of treatments and programs for children with dis-abilities will require an ongoing iterative process in which professionalsand institutions adapt their responses to accommodate the changing cir-cumstances of the child’s environment and development. At the sametime, service providers need to attend to the evolving support needs ofboth the child and his or her family. This type of iterative process doescurrently take place to some extent in some local school districts. Linkswithin the process are often quite weak, however (e.g., support ofnoneducational activities or goals), and medical professionals are oftennot represented. In addition, schools rarely become involved in fam-ily-based supports; rather their focus is on enhancing the child’s educa-tional outcomes. Despite current limitations, the systems model willlikely become the dominant model as today’s children with disabilitiesgrow into tomorrow’s adults with disabilities. These children are amongthe first generations in the U.S. to be included in the general educationschool and classroom as full and equal participants in the educational pro-cess (Ferguson, 2001). Parents are perhaps more aware now of their chil-dren’s medical issues and legal rights than at any other point in time.Keeping pace with the exponential growth of knowledge and innovationin medical sciences will, however, continue to be a challenge.

The pieces to enhance the ‘fit’ for children with disabilities are mostlyin place, but they are not integrated or sequenced to meet the particularneeds of individual clients and their families. What is needed is for thesepieces to be organized in a way that is accessible for parents to guide theirdecision-making process in seeking out appropriate resources and sup-ports. Social workers who are informed about the underlying issues canplay a central role in providing relevant knowledge based on the mostcurrent medical, therapeutic, and social services research.

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Received: November 2, 2003Revised: February 15, 2004

Accepted: February 18, 2004

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Linking Models of Disability for Children with Developmental