Measuring functional skills in preschool children at risk for neurodevelopmental disabilities

MEASURING FUNCTIONAL SKILLS IN PRESCHOOLCHILDREN AT RISK FOR NEURODEVELOPMENTAL

DISABILITIES

Michael E. Msall*University of Chicago Pritzker School of Medicine, Kennedy Mental Retardation Center, LaRabida Children’s Hospital, and

Comer Children’s Hospital, Chicago, Illinois

Approximately 400,000 preschool children have a major neurode-velopmental disorder impacting on mobility, cognitive-adaptive, or commu-nicative skills. As many as 1 in 3 children live at psychosocial disadvantagebecause of poverty, parental mental illness or substance misuse, or lowparental educational (i.e. less than high school). In the past decade over500,000 preschool children have survived being born with very low birthweight (1001–1500 g) or extremely low birth weight status (�1000 g).Given the scope of these risks and the importance of optimizing outcomesfor vulnerable children, this review will highlight advances in functionalassessment using adaptive and multiattribute health-related quality of lifemeasures. A framework based on the International Classification of Func-tioning, (ICF) World Health Organization and the Dynamic KaleidoscopeModel of the Institute of Medicine (IOM) will be described and illustratedwith examples of children receiving new biomedical technologies. Assess-ment scales were chosen for review if they measured adaptive skills ormultiattribute health status and had been used in child disability popula-tions. Instruments reviewed include the Infant and Toddler Quality of LifeQuestionnaire (ITQOL), The Netherlands Office of Prevention Assessment ofPreschool Quality of Life (TAPQOL), the Health Status Classification System-PreSchool (HSCS-PS), the Pediatric Evaluation of Disability Inventory (PEDI),the Vineland Adaptive Behavior Scale (VABS), the Warner Inventory ofDevelopmental and Emerging Adaptive and Functional Skills (Warner IDEA-FS™), the Scales of Independent Behavior Revised (SIB-R) Early Develop-ment Form, the Pediatric Functional Independence Measure (WeeFIM™),and the Pediatric Quality of Life Inventory Version 4 (PedsQL™ 4.0). Bymeasuring functional and adaptive skills and health-related quality of life,we can help devise intervention strategies that optimize developmentalindependence, family supports, and community participation among chil-dren who are at risk for neurodevelopmental disabilities or who have evolv-ing established neurodevelopmental disabilities. © 2005 Wiley-Liss, Inc.MRDD Research Reviews 2005;11:263–273.

Key Words: functional assessment; adaptive skills; pediatric health-re-lated quality of life; preschool development; neurodevelopmental disabili-ties; vulnerable children

INTRODUCTION

The scope of children at risk for neurodevelopmentaldisability or with established neurodevelopmental dis-ability is large. Among American children (birth to 5

years), there are approximately 50,000 children with cerebralpalsy, 100,000 with significant cognitive adaptive disability,40,000 with autistic spectrum disorders, 40,000 with sensori-neural hearing loss (worse than 50 db), and 10,000 with legalblindness (i.e., vision worse than 20/200), [Msall et al., 2001]. Inthe aggregate over 20/1000 preschool children, approximately400,000 in absolute number, have a major neurodevelopmental

disorder impacting on mobility, cognitive-adaptive or commu-nicative skills. Major advances in genetics have allowed for theearly identification of children with chromosomal disorders,inborn errors of metabolism, and congenital malformationsThese disorders involve 30/1000 children and include 600,000preschoolers [Kirby et al., 1995]. Children at risk include thosechildren living at psychosocial disadvantage because of poverty,confirmed child abuse, or parents with mental illness, substancemisuse, or who did not finish high school. As many as 1 in 3children have exposure to these socioeconomic and environ-mental risks [PRB/KIDSCOUNT Special Report, 2002]. Bio-medical risks include low birth weight status and prematurity,failure to thrive, and lead exposure. In the past decade over500,000 preschool children have survived being born with verylow birth weight (1001–1500 g) or extremely low birth weightstatus (�1000 g). Given the scope of these risks and the impor-tance of optimizing outcomes of vulnerable children, this reviewwill highlight advances in functional assessment using adaptivemeasures and multiattribute pediatric health related quality oflife (HRQOL) instruments. A framework based on the Inter-national Classification of Functioning [World Health Organiza-tion, 2001] and the Dynamic Kaleidoscope Model of Institute ofMedicine [National Research Council and Institute of Medi-cine, 2004] will be illustrated for children ages 18 months tokindergarten entry (�5 years) with an emphasis on preschoolcohorts receiving new biomedical technologies.

FRAMEWORKS FOR CHILD HEALTH,FUNCTIONAL–ADAPTIVE SKILLS,AND FAMILY SUPPORTA variety of frameworks have been used to describe the complexweb of children’s health and well being. The first framework,the medical impairment model, focuses on medical diagnosis ofimpairments (pathophysiological processes affecting organ sys-

This paper is dedicated to Irving Harris for his lifelong commitment to enhancinghealth and developmental outcomes of vulnerable children.Contract grant sponsor: NICHD Family and Child Well Being Network: ChildDisability; Contract grant number: 1U01 HD37614.*Correspondence to: Michael E. Msall, University of Chicago, 5841 S. MarylandAvenue, MC0900, Chicago, IL 60637. E-mail: [email protected] 11 July 2005; Accepted 12 July 2005Published online in Wiley InterScience (www.interscience.wiley.com).DOI: 10.1002/mrdd.20073

MENTAL RETARDATION AND DEVELOPMENTAL DISABILITIESRESEARCH REVIEWS 11: 263–273 (2005)

© 2005 Wiley-Liss, Inc.

tem performance including central ner-vous system dysfunction). This clinicalmedical tradition aims for accurate diag-nosis, critical analysis of laboratory indi-cators, and use of optimal managementstrategies informed by intense medicalcohort studies. For example, if a new-born child has cyanotic congenital heartdisease, maintaining the patency of theductus arteriosus, rapid transport to a re-gional pediatric cardiology center, andcomprehensive nutritional and physio-logical supports are undertaken to pre-vent central nervous system or renal dys-function from inadequate tissue perfusion[Mahle and Wernovsky, 2001]. Thisframework is most useful in addressingcardiopulmonary impairments interferingwith a child’s daily health functioningsuch as breathing, feeding, using basicsenses, and being neurologically respon-sive.

The second framework, the devel-opmental disability model, focuses on dis-crepancies between a child’s performanceand that of peers, using appropriate psy-chometric tools. This tradition quantifiesdelays in development or intensity ofclusters of behavioral states and estab-lishes criteria for the following: (1) de-velopmental motor, cognitive, or adap-tive disorders; (2) communicativeimpairments; (3) coordination and per-ceptual impairments; (4) autistic spec-trum disorders; (5) attention deficit hy-peractivity disorder; (6) and social-emotional disorders. The strength of thismodel is the reliance upon comprehen-sive assessments of developmental andbehavioral processes often involving sev-eral sessions of standardized interviewingand structured observation. The robustobservational traditions of Gesell, Bayley,Illingworth, Griffiths, and Capute allowfor descriptions of a child’s movementsand hand skills, and elicitation of prob-lem solving skills with blocks, toys, puz-zles, crayons, and dolls—all of which arehelpful in the assessment of young chil-dren [Bayley, 1933;Gesell et al., 1940;Griffiths, 1954; Neligan and Prudham,1969; Capute and Biehl, 1973; Illing-worth, 1984]. More recently, theMacArthur Communicative Develop-mental Inventories, the Communicationand Symbolic Behavior Scales Develop-mental Profile, and the Capute Scaleshave demonstrated the value of gestures,nonverbal communication, and play asprecursors of communicative and socialskills [ Fenson et al., 2002;Wetherby andPrizant, 2002; Capute and Accardo,2005].

Despite their relative strengths,both the medical impairment model and

the developmental disability model focuson a child’s deficits and do not ade-quately account for a child’s skills in per-forming daily living activities in naturalenvironments at home and in the com-munity. For example, stating that a childhas the medical impairment of hemiple-gic cerebral palsy and does not performthe running task on the Gross MotorFunction Measure does not acknowledgethat the child may be able to executemany other important tasks such as walk-ing, dressing, and maintaining conti-nency at kindergarten entry [Russell etal., 2002]. Similarly, describing a childwith Trisomy 21 who has a PeabodyDevelopmental Motor Scale Fine MotorQuotient of 65 and central hypotonia ashaving neuoromotor impairment be-cause she has challenges in copyingshapes and manipulating keys to unlockdoors may obscure the child’s functionalstrengths in self-feeding, basic dressing,ability to match, and imitative social skills[Folio and Fewell, 2000].

A shortcoming of both the medicalimpairment model and the developmen-tal disability model is that a large numberof children do not receive a combinationof medical and developmental assess-ments over time that are informed bycurrent best practices. Too often, explicitmeasures of spontaneous movements,postural skills, and adaptive-functionalskills are not systematically described sothat a child with cerebral palsy is given ascaled score on motor skills that peersperform easily. These discriminative as-sessment measures do not lead to crite-rion statements about a child’s strengthsor challenges in self-mobility, posturalcontrol, manipulative hand skills, com-municative understanding, or problemsolving skills. Lastly, assessments usingstrictly pass fail approaches on timeditems too often ignore developmental as-sets of curiosity, persistence, and flexibil-ity during task performance. In addition,disproportionate effort is spent in the ini-tial comprehensive assessment with fewerresources available for monitoring, im-plementation, and assuring quality andtimely delivery of basic services.

Most importantly, diagnosing a de-velopmental disability does not necessar-ily mean that a child will not makeprogress in certain skills in the future. Forexample, most preterm children with de-velopmental language disorders (e.g.,Preschool Language Scale 4 Total Score�80, with Bayley 2 Mental Develop-mental Index �80) learn to adequatelycommunicate in spoken sentences [Bay-ley, 1993; Zimmerman, 2002]. How-ever, these children often have mixed

learning and behavior disorders in pre-school and child care settings that requireadditional supports and accommodationsso that they can interact and participatewith peers.

The third framework, the biopsy-chosocial model, combines biological, psy-chological, and social perspectives on achild’s health and well being. This modeltakes into account the child’s physical,behavioral, and developmental status aswell as their use of compensatory services[Stein and Silver, 1999]. Medical servicesinclude prescription glasses, hearingaides, inhalation medications for asthma,anticonvulsants, and nutritional supports.Rehabilitative and assistive technologyservices include physical therapy, occu-pational therapy, speech-language ther-apy, alternative mobility supports, aug-mentative communication, and roboticassistants. Educational supports includeEarly Intervention and Special Educationservices as well as 504 Plans [Rehabilita-tion Act of 1973]. Behavior supports in-clude behavior management, familycounseling, and psychopharmacologicalmedications. The biopsychosocial modelallows for descriptions of the child’s de-velopmental strengths as well as chal-lenges with daily activities. In addition, itcan be applied to a heterogeneous pop-ulation of children with complex medi-cal, developmental, or behavioral impair-ments. The weakness of this model is thata preschool child with myopia, seasonalrhinitis, and eczema can be described ashaving multiple impairments that requirerepeated use of medications and healthservices despite having readily controlledsymptoms.

The fourth framework, the Interna-tional Classification of Functioning (ICF)model, describes a child’s health and wellbeing in terms of four components: (1)body structures, (2) body functions, (3)activities, and (4) participation (WorldHealth Organization, 2001). Body struc-tures are anatomical parts of the body,such as organs and limbs, as well as struc-tures of the nervous, sensory, and mus-culoskeletal systems. Body functions arethe physiological functions of body sys-tems, including psychological functions,such as attending, remembering, andthinking. Activities are tasks, includinglearning, communicating, walking, car-rying, feeding, dressing, toileting, bath-ing, playing, and interacting with peersand adults. Participation means invove-ment in community life, such as playgroups, nursery school, visiting relatives,and involvement in recreational, reli-gious, and social groups.

264 MRDD RESEARCH REVIEWS ● FUNCTIONAL SKILLS IN AT-RISK CHILDREN ● MSALL

The ICF model also accounts forcontextual factors in a child’s life, includ-ing environmental and personal factors.Environmental factors, such as policy, so-cial, and physical facilitators and barriers,include positive and negative attitudes ofothers, legal protections, and discrimina-tory practices. Personal factors includeage, gender, interests, and sense of self-efficacy. Figure 1 illustrates how to apply

the ICF model to a 4-year-old boy withdiplegic cerebral palsy.

The strength of the ICF model isthat it describes both functioning andenablement. Its weakness is that it has notbeen widely used with children and doesnot have explicit indicators for all thedomains of the model. However, themodel does offer the promise of a muchbroader perspective with respect to chil-

dren’s activities and participation [Sime-onson et al.; 2000]. To illustrate the po-tential of this model, a variety ofscenarios are described in Table 1.

More recently, the Institute ofMedicine proposed a Developmental Ka-leidoscope Model of Children’s Healththat includes biology and behavior, phys-ical and social environment, and policyand services. This is illustrated in Figure 2for a 2-year-old boy who is not yet com-municating in words [National ResearchCouncil and Institute of Medicine,2004].

MEASURING FUNCTIONALSTATUS: MULTIATTRIBUTEHEALTH AND ADAPTIVEMEASURESSeveral tools are available to health pro-fessionals for the assessment of health,development, and functional status forchildren aged 1.5–5 years. These havebeen described in detail by developmen-tal pediatricians, psychologists, and edu-cators [ Overton, 1992; Aylward, 1994;Meisels and Fenichel, 1996; Vohr andMsall, 1997; Bracken, 2000; Lidz, 2003;Vohr et al., 2004]. I will describe several

Fig. 1. ICF-Model: 4-year-old boy with diplegic cerebral palsy.

Table 1. ICF Model Scenarios in Preschoolers with Diverse Neonatal Risks

Dimension Definition Boy (2 years) Girl (3 years) Boy (4 years)Pathophysiology Molecular/cellular

mechanisms800 g, 27 weeks gestation 3.5 kg, truncus arteriosus,

22 q deletion2.2 kg, term, IUGR prenatal

cocaine exposure

Body structures andbody functions

Organ structure/function

Asthma, fussy appetite Central hypotonia,speech delays, 40 dbhearing loss

Growth delays, hyperactivity,impulsivity

Activity (functional)strengths

Ability to performessential activi-ties: feed, dress,toilet, walk, talk

Runs fast, drinks withstraw, likes to pretendplay with trucks

Walks, sits on potty, talksin phrases unclear tostrangers

Learns songs, plays withpeers outdoors

Activity (functional)limitations

Difficulty in per-forming essentialactivities

Has difficulty chewingand sharing, not speak-ing in phrases

Has difficulty running,speaks more clearlyand is more social withhearing aide

Has difficulty with speech,perception, and attention

Participation Involvement incommunity rolestypical of peers

Plays in parallel with peers Attends Montessori pre-school

Attends YMCA swimminglessons

Participation restric-tions

Difficulty in assum-ing roles typicalof peers

Misses early Head Startbecause of asthma, usessupplemental nutritionproducts

Teachers forbid gym be-cause of heart surgery,nurse can not monitorhearing aide

Was expelled from HeadStart because of impulsivebehavior

Contextual factors:environmentalfacilitators

Attitudinal, legal,policy, and ar-chitectural facili-tators

Has asthma care plan, par-ticipates in HanenGroup

Loves songs with ges-tures, learns manythings from watchingpeers

Parent knows his strengthsand uses behavior man-agement

Contextual factors:environmentalbarriers

Attitudinal, legal,policy, and ar-chitectural barri-ers

On waiting list for speechtherapy, insurance doesnot include pediatricaudiologists

Family lacks strategies topromote hearing aideuse, teen baby sittersare fearful

Small peer social skill groups;family moves frequently

265MRDD RESEARCH REVIEWS ● FUNCTIONAL SKILLS IN AT-RISK CHILDREN ● MSALL

preschool assessments that measure healthstatus, functional and adaptive skills, andmultiattribute health-related quality oflife. More comprehensive reviews ofHRQOL and child well-being includeDrotar [1998], McDowell and Newell,[1996], Koot and Wallander, [2001], andBornstein et al., [2003].

The Child Health Questionnaires(CHQ) [Landgraf et al., 1996] measurephysical functioning, role and social lim-itations, general health perception, bodilypain, self-esteem, parental impact of timeand emotions, mental health, general be-havior, family activities, family cohesion,and change in health among childrenaged 5 and above. The strength of thismodel is that it includes multiple domainsof physical, behavioral, and developmen-tal health in middle childhood and ado-lescence, as well as impact on families,school functioning, and social function-ing. The other strength of this model isthat the explicit parental interview for-mats are included and there is a checklistfor identifying ongoing conditions suchas asthma, inattention, behavioral prob-lems, chronic allergies and sinus disor-ders, musculoskeletal problems, develop-mental delay or mental retardation,

diabetes, epilepsy, hearing or visual im-pairments, learning problems, speechproblems, and sleep disturbances.

Building on Landgraf’s CHQ,Klassen and colleagues developed a 103-item Infant and Toddler Quality of LifeQuestionnaire (ITQOL) for childrenaged 2 months to 5 years. ITQOL do-mains include physical abilities, growthand development, pain and discomfort,temperament and mood, general behav-ior, getting along with others, generalhealth perception, and change in health[Klassen et al., 2003]. There are also fiveparental categories, including anxiety andworry about child’s health, limitations intime to meet parental needs because ofchild’s health, general health perception,and family cohesion. This instrument wasused to assess 1140 neonatal intensivecare survivors and 393 healthy term in-fants. Children who were in the NICUdiffered from healthy children in physicalabilities, growth, development, tempera-ment, mood, behavior, general healthperceptions, and caregivers’ burden.Concurrent validity of the ITQOL in-cluded the Health Classification SystemPreschool Version (HSCS-PS)—a multi-attribute assessment of hearing, speaking,

mobility, use of hands and fingers, self-care, feelings, learning and remembering,thinking and solving problems, pain anddiscomfort, and general health and be-havior. The HSCS-PS is part of theHealth Utilities Index for evaluatingHRQOL and has been validated in co-horts of extremely low birth weight sur-vivors at age 3 years in Canada and Aus-tralia as well as preschool children withcerebral palsy [Saigal et al., 2005]. TheITQOL validation cohort involved bothvery low and extremely low birth weightneonatal intensive care survivors fromBritish Columbia. At age of 3.5 thesechildren had more problems with sight,speech, mobility, dexterity, self-care,learning, remembering, thinking, prob-lem solving, pain, and general health andbehavior than children who were born atterm [Klassen et al., 2004]. Subsequentvalidation studies at age 3–4 years usedthe Child Behavioral Checklist [CBCL/1.5–5; Achenbach and Rescorla 2000],the Medical Outcomes Study ShortForm 36 [MOS SF36; Ware and Sher-bourne, 1992] for parental physical andmental health, and a family assessmentmeasure. These studies also confirmedgood reliability and construct validity inboth healthy and at-risk children [Klassenet al., 2003, 2004].

Two additional measures havebeen developed to address the multiat-tribute dimensions of infant, toddler, andpreschool parental perception of healthstatus and health-related quality of life.Fekkes and colleagues working in theNetherlands Office of Prevention(TNO-AZL) developed the TNO-AZLPreschool Children Quality of Life In-strument (TAPQOL) [Fekkes et al.,2000]. In the TAPQOL there are foursubscales reflecting 12 domains. Thephysical functioning subscale includessleeping, appetite (feeding), and prob-lems with lungs, stomach, and skin, aswell as motor functioning (walking, run-ning, balance). Social functioning in-cludes play with peers, self-esteem, andsocial comfort, as well as problem behav-ior (anger, irritability, short temper, ag-gression, restlessness, demand-making).Cognitive functioning includes under-standing what others say, speech, andelaborating in expressive language. Emo-tional functioning includes mood, anxi-ety, and liveliness (energy and activitylevel).

The TAPQOL was used to assess acohort of preterm children of which overhalf were �32 weeks gestation. Thesescores were compared with the perfor-mance of term children. Concurrent va-lidity included Functional Status 2nd edi-

Fig. 2. Developmental Kaleidoscope Model of Children’s Health, Well being, and Potential.


tion Revised (FS-IIR), face validationwith known chronic diseases, and bothhealth and behavioral status Likert ratingsby parents [Stein and Jessop, 1990]. Cor-relations between total TAPQOL andFS-IIR were approximately 0.5 for bothpreterm children and controls but loweracross individual domains. Very pretermchildren, children with chronic medicalimpairments, children with lower paren-tal rating of health status, and less happychildren had significantly lower meanscores than that of compared peers[Fekkes et al., 2000]. Recently the feasi-bility, reliability, and validity of theTAPQOL were assessed by a mail ques-tionnaire for infants aged 2–12 monthsand preschoolers aged 1–4 years. Whencomparing children with no chronichealth conditions to children with two ormore chronic health conditions, theTAPQOL physical scores were signifi-cantly higher for those children withmore chronic health impairments [Bungeet al., 2005].

Table 2 summarizes several of thehealth, functional, and support questionsused in population surveys. Ongoing re-search is required to examine how indi-cators of preschool health and functionalstatus apply to survivors of very low andextremely low birth weight status andhow these preschool indicators informlong-term health, behavior, and educa-tional outcomes.

In 1992, the American Associationof Mental Retardation (AAMR) definedadaptive behavior as the effectiveness bywhich an individual meets the standardsof independence and social responsibilityexpected of their age and culture [Luck-asson et al., 1992]. Schalock in analyzingthe structure of adaptive behavior pro-posed a frame work of practical skills,conceptual skills, and social skills as coreconstructs in the measurement of overallcompetence [Schalock, 1999]. Practicalskills were defined as the ability to dealwith the physical and mechanical aspectsof life such as self-help skills, activities ofdaily living, and beginning in middlechildhood instrumental activities of dailyliving; such as chores, meal preparation,and shopping. Conceptual skills includedthe ability to solve abstract problems aswell as the ability to use and understandlanguage and use and apply symbolicprocesses such as reading for information.Social skills included the ability to inter-act with peers, participate in group activ-ities, and maintain self-control [Schalock,1999].

The Functional IndependenceMeasure for Children (WeeFIM-TM) isan evaluative measure of basic functionalskills that consists of 18 items encompass-ing three subscales: self-care, mobility,and social cognition [Msall et al., 1994b].There are 8 items for self-care activitiesof daily living, 5 items for mobility, and 5

items for social cognitive functioning.The later domain includes understandingverbal and nonverbal communication,use of language and gestures, social inter-action, play, and memory of routines.The WeeFIM instrument has beennormed on a population of over 500children in good health and without dis-ability (aged 1–7 years) living in WesternNew York and has a robust correlationwith chronological age for children be-tween 18 and 48 months [Msall et al.,1994a]. Initial validation studies includedover 700 children with neurodevelop-mental disabilities, included extreme pre-maturity (n � 200), cerebral palsy (n �100), and genetic disorders (n � 150)[Msall et al., 1994b]. In preschool chil-dren with evolving motor, communica-tive, and developmental impairment; theWeeFIM proves to have excellent test–retest reliability as well as concurrent va-lidity with psychological and educationalmeasures of adaptive functioning, includ-ing the Battelle Developmental Screen-ing Inventory, the Vineland AdaptiveBehavior Scales, the Pediatric Evaluationof Disability Inventory, and the Amountof Assistance Questionnaire [Otten-bacher et al., 1997; Ottenbacher et al.,1999; Ottenbacher et al., 2000a; Msall etal., 2001]. The WeeFlM also has excel-lent equivalence reliability for face-to-face or telephone interviews [Otten-bacher et al., 1996]. Most importantly,

Table 2. Preschool Child Health Status, Functional Status, and Supports

Medical impairmentsHas your child had any of the following: asthma, tracheostomy, middle ear tubes, feeding (gastrostomy) tubes, heart disease requiring medication or

surgery, cerebral palsy, developmental disabilities, seizure disorder, sleep disorder, sickle cell anemia, iron deficiency anemia, gastro esophageal refluxdisease?

ParticipationDoes your child receive home nursing? Does your child have a home visitor? Is your child enrolled in Early Intervention? Does your child attend a

preschool?

Functioning: self-care and motorDoes your child need more help than other children of his/her age or have difficulty in completing the following activities because of an impairment

or condition: eating, grasping objects, dressing, reaching overhead, bathing, lifting, toileting, bending, changing positions, walking, stooping, climb-ing stairs, standing indefinitely?

Multi-attribute status: sensory, communication, development, and behaviorDescribe your child’s vision: (1) is blind; (2) has difficulty seeing even with glasses; (3) sees adequately with glasses; (4) does not require correction.Describe your child’s hearing ability: (1) is deaf; (2) has difficulty hearing even with hearing aid; (3) hears adequately with hearing aid; (4) has no

hearing problem.Describe your child’s ability to communicate: (1) unable to communicate in words, gestures or sign language; (2) unable to communicate in conversa-

tions requiring sentences; (3) has difficulty being understood by others when speaking or signing; (4) has no problem communicating.Describe your child’s development: (1) has some delay; (2) has an emotional or behavioral problem lasting more than 3 months; (3) has difficulty

learning; (4) has no problems in development and learning.Describe your child’s experience with doctors or counselors for an emotional, developmental, or behavioral problem: (1) has not been seen; (2) has

been seen.If your child has been seen by a doctor or counselor for an emotional, developmental, or behavioral problem, when was the last time? Is your child

receiving services? Is he or she receiving medication? Do you feel that it is helping and working?

Health status: child and parentHow would you rate your child’s physical health, mental health, and developmental status on a scale of Excellent, Very good, Good, Fair, and Poor?

How would you rate your own physical health, mental health, or ability to work outside the home using the same scale?


the WeeFIM demonstrated responsive-ness to change over time in the preschoolyears in a diverse cohort of children withmotor, communicative, health, and de-velopmental challenges [Ottenbacher etal., 2000b]. The WeeFIM has been usedin the longitudinal study of developmen-tal, health, and functional outcomes inchildren with severe congenital heart dis-ease [Limperopoulus et al., 2001], inchildren with spinal muscle atrophy[Chung et al., 2004], in children withretinopathy of prematurity [Msall et al.,2000a ], in girls with severe disabilities asa result of Rett’s Syndrome [Colvin etal., 2003], and in survivors of shakenbaby-inflicted head trauma. It has beentranslated into Japanese, Chinese, andThai with both norms generated for chil-dren in good health and without disabil-ity and application to children with dis-ability using appropriate developmentalassessments [Tsuji et al., 1999; Jongjit etal., 2002; Wong et al., 2002].

Because the WeeFIM items in-clude several components of an activity,the test rating does not reflect partial suc-cess in particular skills. For this reason,Msall and colleagues have developed theWarner Inventory of Development andEmerging Adaptive and Functional Skills(Warner IDEA-FS™). The Warner is a43-item inventory encompassing do-mains of self-care (eating, dressing, anddiaper awareness), motor tasks, commu-nication, and social cognition. Initialstandardization involved over 300 chil-dren aged 2–30 months seen in pediatricprimary care during well child visits. Ro-bust construct validity occurred betweenthe Warner and Capute Scales and be-tween child age and progression of adap-tive skills [Msall et al., 2001].

The Pediatric Evaluation of Dis-ability Inventory (PEDI) assesses self-care, mobility, and social functional ac-tivities in children aged 6 months–8years. [ Feldman et al., 1990; Haley et al.,1992]. Social function includes commu-nication, problem solving, play, peer andadult interaction, memory, householdchores, self-protection, and communitysafety. In addition there is a CaregiverAssistance and Environmental Modifica-tion Scale. The PEDI Caregiver Assis-tance Scale includes 8 self-care items, 7mobility items, and 5 social functionitems. These categories directly overlapwith the WeeFIM. Correlations betweenthe WeeFIM and PEDI Caregiver Assis-tance are excellent [Ziviani et al., 2001].Thus one can use either the WeeFIM orPEDI if one wishes to measure functionalstrengths and limitations in toddlers andpreschoolers. The PEDI has been used in

children with traumatic brain injury,children with cerebral palsy, childrenwith spina bifida, and children in pre-school programs because of physical ordevelopmental impairments [Kothari etal., 2003; Haley et al., 2004].

The strengths of the PEDI and theWeeFIM are that both instruments re-flect a rich tradition of measuring basicactivities of daily living. Additional ben-efits of the PEDI are that there is a com-puter-assisted testing format, which hasbeen widely translated into Europeanlanguages, and it has been widely usedamong pediatric rehabilitation profes-sionals in hospital and community set-tings. The weaknesses of the WeeFIM isthat outpatient aggregated preschool datahas not been available for centers servingchildren in early intervention or receiv-ing outpatient special health care needservices. Additionally, its norms are fromonly one geographic region and thus maynot reflect the diversity of the nationalpopulation.

The Vineland Adaptive BehaviorScale is an interview survey for assessingadaptive behavior [Sparrow et al., 1984].In children younger than 6 years, thedomains include communication (recep-tive, expressive language), daily livingskills (self-care/personal), socialization(interpersonal relations and play), andmotor skills (gross and fine). For thesechildren, there are 40 communicationskills, 50 daily living skills, 35 socializa-tion items, and 36 motor items. TheVineland Adaptive Behavior Scale(VABS) has been used in children withpreschool developmental disabilities in-cluding autistic spectrum disorders.There is a Social Emotional Early Child-hood (SEEC) Scale that uses the VABSsocialization domain for children at birthto 6 years [Sparrow et al., 1997]. TheVineland SEEC Scale includes 44 itemson interpersonal relationships, 44 on Playand Leisure time, and 34 on coping skills.There is excellent concurrent validitywith the Personal Social Domain of theBattelle Developmental Inventory as wellas the Early Development Scale of theScales of Independent Behavior.

The Scale of Independent Behav-ior Revised (SIB-R) has an early devel-opment form for children aged birth to 5years [Bruininks et al., 1996]: The adap-tive behavior domain includes 40 itemswith ratings of 0 (rarely or never per-forms), 1 (performs about 25% of thetime), 2 (does fairly well or about 75% ofthe time), and 3 (does very well withoutbeing asked almost all the time). Inthe SIB-R, scores are categorized aspervasive (reflecting developmental per-

formance up to an 8-month level),extensive (reflecting developmental per-formance between a 9- and 12-monthlevel), frequent (reflecting developmentalperformance between a 13- and 18-month level), limited (reflecting develop-mental performance between a 19- and27-month level), intermittent (reflectingdevelopmental performance between a28- and 40-month level), and infrequent(reflecting developmental performancebetween a 41- and 71-month level). Achild scoring in the limited range is able toambulate, feed himself or herself, use aspoon and cup, point, consistently indi-cate yes or no to basic need questions,and say 10 words. A child scoring in theintermittent range is able to ask ques-tions, negotiate stairs, and is toilet-trainedwith supervision. In the SIB-R, a child at50 months is able to perform outer weardressing such as putting on gloves, ob-taining appropriate portions of food, fol-lowing two part directions, and sayingone’s last name. Children aged 8 yearsand older are expected to be able tochange clothing if it is dirty, use a tissuefor sneezing and coughing, tie shoelaces,adjust faucets before bathing, travel fourblocks in a familiar environment withpeers, read and understand books ormagazines, write one’s complete addresswith zip code, and find a telephone num-ber in a directory. In addition, the SIB-Rcontains eight domains of problem be-havior including hurtful to self, hurtful toothers, destructive of property, disruptivebehavior, unusual or repetitive habits, so-cially offensive behaviors, withdrawn orinattentive behaviors and uncooperativebehaviors. Both frequency ratings (0 �never to 3 � 1 or more times/week, to5 � 1 or more times/hour) and severityratings (0 � not serious to 3 � veryserious) occur in the problem behaviordomains. The strength of the SIB-REarly Developmental Form is that it hasapplication for basic adaptive skills andproblem behaviors for children with sig-nificant cognitive or autistic spectrumdisorders and can map to AAMR levelsof support. The weakness is that there iscomplex scoring system and that thewide use of AAMR classification levels inpreschoolers with developmental chal-lenges has not yet occurred.

Table 3 summarizes several adap-tive and functional measures for pre-schoolers with neurodevelopmental dis-abilities as well as areas of ongoingresearch. The Alberta Infant Motor Scale(AIMS) [Darrah et al., 1998], the GrossMotor Function Measure (GMFM)[Russell et al., 2002], the MacarthurCommunicative Developmental Inven-


tories (CDI) [Fenson et al., 2002], theCommunication and Symbolic BehaviorScales Developmental Profile [Wetherbyand Prizant, 2003], and the Infant-Tod-dler Social and Emotional Assessment(ITSEA) [Carter and Briggs-Gowan,2000] are domain-specific assessmentssummarized in Table 4. The AIMS mea-sures postural skills in both normal andat-risk infants through the age of walk-ing. The GMFM measures gross motorfunctional performance in rolling, sitting,crawling, standing, walking, running,and jumping, and its most difficult areasreflect gross motor skills done by 5-yearolds. It contains 88 items and is an eval-uative measure for children with Cere-bral Palsy. It is the basis for the GrossMotor Functional Classification System(GMFCS), an ordinal ranking system ofmeaningful levels of functional perfor-mance, so that children receiving ortho-pedic, neurosurgical, pharmacological,orthotic, and rehabilitational interven-tions can be described over time. TheMacArthur CDI assesses infants and tod-dlers ages 8–16 months for gestures andwords, and children aged 16–30 monthsfor words and sentences are included.

The strength of this measure is that itcaptures 19 semantic categories of child’sinitial words as well as a child’s morpho-logical and syntactic development. TheITSEA assesses attention, compliance,imitation, mastery, motivation, empathy,and prosocial functional behaviors inchildren aged birth to 3 years. It has bothsound item construction from laboratoryobservations as well as excellent psycho-metric properties [Carter et al., 2003].These domain specific instruments candescribe motor, communicative, and so-cial functions for children aged 2–3 yearsand go beyond early sensorimotor per-formance. Future research will be re-quired to ascertain how these measurespredict 4 and 5 year developmental statusin at-risk cohorts.

One additional measure, the Pedi-atric Quality of Life Inventory Version 4(PedsQLTM4.0), merits comment [Varniet al., 2003]. This instrument is designedto measure HRQOL in children and ad-olescents. There are parent proxy-reportsfor preschoolers aged 2–4 and 5–7.There is also a child self report for chil-dren aged 5–7. The generic core scaleconsists of 23 items: 8 physical function-

ing items, 5 emotional functioning items,5 social functioning items, and 5 schoolfunctioning items. This instrument dis-tinguishes between healthy children andchildren with special needs, and has beentranslated into multiple languages includ-ing Spanish. There are disease specificversions for specific pediatric impair-ments including cardiac, asthma, oncol-ogy, and arthritis. Initial studies demon-strate that the instrument is responsive toclinical change over time and can distin-guish disease severity within a chronichealth condition.

One of the advantages of using func-tional measures is the ability to apply theconstruct to population surveys. For exam-ple, Hogan and colleagues examined func-tional limitations in mobility, self-care,communication, and learning in school-age children, using the 1994–95 NationalHealth Interview Survey Disability Supple-ment [Hogan et al., 2000]. This was a rep-resentative, diverse sample of school-agechildren and allowed for population esti-mates. Among the 50 million school-agechildren (5–17 years) the prevalence ofmotor functional disability was 2.5/1000,self-care disability was 5/1000, communi-

Table 3. Adaptive-Functional Scales for Childhood Disabilities

(WIDEA-FS™)Warner Initial De-velopmental Eval-uation of Adaptiveand FunctionalSkills™

VABSVineland AdaptiveBehavior Scales

HSCS-PSHealth Status Classi-fication System-Pre-School

SIB-RScales of IndependentBehavior-RevisedEarly DevelopmentalForm

PEDIPediatric Evaluationof Disability Inven-tory

WeeFIM™Functional IndependenceMeasure for Children

Age range Birth-36 months Birth-18 years 2.5–5 years Birth-5 years Birth-8 years Birth–7 years

Domains Self-care; mobility;social cognition:verbal, gesture,play

Communication;daily living;socialization;motor

General health; pain;vision; hearing;speech; dexterity;self-care, mobility;emotion, behav-ior; learn/remem-ber; think/prob-lem solve

Adaptive skills; prob-lem behaviors

Motor; self-care;social function;caregiver assis-tance (CA) envi-ronmental modi-fications (EM)

Self-care; mobility; socialcognition

Concurrentvalidity

Capute Scales;chronologicalage

Vineland SocialMaturity Scale;Kaufman ABC;Peabody PictureVocabulary Test

GMFM-CS; Bayley2; Stanford-Benet;VABS

Chronological age;early screeningprofiles

Battelle; WeeFIM;injury severity

Battelle; VABS; PEDI;Amount of AssistanceQuestionnaire

Disabilitysamples

Children in earlyintervention orwith specialhealth careneeds

Children withautistic spec-trum disorders,mental retarda-tion, or devel-opmental dis-abilities

Children with pre-maturity or cere-bral palsy

Children with mentalretardation or de-velopmental dis-abilities

Children with braininjury, cerebralpalsy, spinal in-jury, or juvenilearthritis

Children with cerebralpalsy, prematurity, orcongenital heart; sen-sory, genetic, develop-mental, learning, orattentional disorders

Time toadminister

15 min 30 min 15 min 5 min 45 min; 15 min forCA/EM scales

20 min

Future re-search

US centers forchild disability

Use in early inter-vention

Expanded use inpreschool

Prediction at 6–10years

Computerized as-sisted version

Multicenter norms


cation-sensory disability was 30/1000, anddevelopmental disability in learning, atten-tion, and behavior was 100/1000. Overallthere were 125,000 American school chil-dren with severe motor disability, 250,000with self-care disability, 1,500,000 withcommunication-sensory disability, and5,000,000 with learning-attention-behav-ior disability. Of children with multiplelimitations in functioning almost 3 in 5 hadeither a neurodevelopmental or learning-behavioral disorder, approximately 1 in 5had a physical disorder, and 1 in 5 did nothave an identified impairment because theyhad not received medical services in thepast year [Msall et al., 2003]. Of additionalconcern was that more than half of thechildren needing or receiving special edu-cational services had no recent contact withmedical professionals.

APPLICATIONS OF ADAPTIVEBEHAVIORS

Example 1: Use of the PediatricEvaluation of Disability Inventoryin the Midwest Newborn LungProjectPalta and colleagues assessed 425 very lowbirth weight survivors at 5 years who werepart of a neonatal regional study of respira-tory complications after prematurity [Paltaet al., 2000]. Both the presence of severeintraventricular hemorrhage and broncho-pulmonary dysplasia independently pre-dicted the presence of cerebral palsy, which

occurred in almost 1 in 7 of those followedat age 5 years. Using the PEDI, it has beenfound that children without Intraventricu-lar hemorrhage (IVH) or with grade 1 IVHhad self-care, mobility, and social functionmean scores within the broad range of nor-mal. Children with grade 3 or 4 IVH hadscores between 1 and 1.8 standard devia-tion units (z) below the mean. This re-flected functional challenges in self-care,mobility, and social function compared tokindergarten peers. Using a criterion forfunctional limitations, as scores more than 2z below the mean, children without cere-bral palsy had 5% self-care functional limi-tations, 21% motor functional limitations,and 8% social functional limitations In con-trast, among children with cerebral palsy,self-care functional limitations occurred in57%, mobility functional limitations in89%, and social functional limitations in32%. This effort helped highlight the widerspectrum of motor and social functionalchallenges in children without cerebralpalsy who were born with very low birthweight status.

Example 2: Use of the VinelandAdaptive Behavior Scales inPreschool Children withCommunicative andNeurobehavioral ChallengesRapin and colleagues found that functionaland adaptive assessment were importanttools for preschool children with commu-nicative disorders—whether developmen-

tal language disorders, high (nonverbal in-telligence quotient (IQ) 80�) and low(nonverbal IQ � 80) functioning autisticspectrum disorders—and children withcognitive disability (IQ � 70) but no fea-tures of autistic spectrum disorder [Rapin,1996]. Using the VABS, Rapin’s teamfound the following mean daily livingscores for each group of children: (1) de-velopmental language disorders � 85 and(2) high functioning autism � 70, cogni-tive disability � 64, and low functioningautism � 51. Among children with high-functioning autistic spectrum disorder, pic-ture vocabulary recognition predicted theVABS communication score. Among chil-dren with developmental language disor-ders, nonverbal IQ predicted the VABSsocial score. Among children with low IQautistic spectrum disorders, IQ predictedthe VABS communication score as well asthe social score. Among children with cog-nitive disabilities, the verbal IQ score pre-dicted the VABS communication and so-cial scores. Thus adaptive behavior can helpassess the impact of a child’s communica-tive or cognitive disability not only oncommunicative skills but also on self-careand social skills.

Example 3: Functional Assessmentin 3–4 Year Olds with Motor orCommunicative DisabilitiesIn the Infasurf–Exosurf multicenter com-parison trial, functional assessment wasperformed in 206 survivors aged 3 and 4

Table 4. Domain Specific Functional Scales for Childhood Disabilities

Motor Domains Concurrent Validity Disability Samples

Alberta Infant Motor Scale(AIMS)

Prone, supine, sit, stand Peabody Developmental Gross Motor Scale,Bayley Scales Performance Developmen-tal Index

Very low birth weight, early intervention

Gross Motor FunctionMeasure (GMFM)

Roll, sit, crawl, kneel, stand,walk, run, jump

Responsive to change in cerebral palsy,Down syndrome, and brain injury:

Ontario Cerebral Palsy Treatment Cen-ters; Motor Curves Basis of Gross Mo-tor Functional Classification System(GMFCS)

Communicative

MacArthur Communica-tion DevelopmentalInventory (CDI)

Words and gestures, wordsand sentences

Expressive One Word Picture VocabularyTest, Preschool Language Scale

Preterm, twins, Down syndrome, prena-tal drug exposure

Communication and Sym-bolic Behavior ScalesDevelopmental Profile(CSBS-DP)

Social (emotion/gesture),speech (sounds/words),symbolic (understanding/toys)

Mullen Scales of Early Learning Children with 2 of 5 Mullen domains(gross/fine motor, visual recognition,receptive/expressive language) scoring�10%

Behavioral

Infant Toddler Social andEmotional Assessment(ITSEA)

Externalizing, internalizing,dysregulation competen-cies

Mullen Scales, Vineland SEEC, MacArthurCDI

78 children aged 1–2 years rated as diffi-cult

Vineland Social-EmotionalEarly Childhood Scales(SEEC)

Interpersonal relationships,play and leisure time,coping skills

Battelle Personal Social Domain, SIB EarlyDevelopmental Scale

Down syndrome, cerebral palsy, develop-mental delay, autistic spectrum disor-ders


years [Msall et al., 2000b ]. The assess-ment battery included physical and neu-rological evaluation, the Preschool Lan-guage Scale, and the WeeFIM-TM. Ifthe child was 3 years old, the develop-mental assessment was the Bayley II. Ifthe child was 4 years old, the assessmentwas a Stanford Binet-4 or WPPSI-2. TheMean birth weight was 979 g and theMedian Gestational Age was 27.4 weeks.There was additional psychosocial riskincluding, almost half of children withminority status, from single parenthouseholds, and receiving MedicaidHealth Insurance. In addition, 8.3% ofthe mothers had not completed highschool. There were high rates of com-municative and motor disability with18% having cerebral palsy, 6% a cognitivedevelopmental disability, 24% a commu-nication disability, and a 2% sensory dis-ability. Among children without Cere-bral Palsy, developmental disability, orcommunicative disability, mean WeeFIMquotients were greater than 90%. Meantotal WeeFIM quotients were 60% inchildren with Cerebral Palsy, 70% in De-velopmental Cognitive Disability, and78% in Communicative disorders. Pat-tern recognition revealed that childrenwith Cerebral Palsy had major challengesin mobility and self-care with strengthsin social cognition. Children with Devel-opmental Disability and CommunicativeDisability had strengths in mobility withchallenges in both social cognition andself-care. Children with sensory disabilityhad major challenges in both self-careand mobility and were often multiplydisabled. Overall almost 1 in 5 preschoolchildren who survived very low birthweight status or extremely low birthweight status had severe functional limi-tations. Children with birth weights�800 g, chronic lung disease, or paren-chymal brain injury had the highest ratesof functional limitations. Children withnormal functional status were unlikely tohave a motor, cognitive, communicative,or sensory disability.

Example 4: Use of the WeeFIM inShaken Baby SyndromeLowen and colleagues examined 75 chil-dren with inflicted head trauma in thefirst year of life and evaluated at a meanof 5 years later [Lowen et al., 2000].Children had high rates of neurosensorydisorders including seizure disorders in44%, shunts for hydrocephalus in 26%,disabling cerebral palsy (unable to walk)in 46%, visual disability in 60% and hear-ing impairment in 8%. The WeeFIM in-strument was used to classify severity offunctional disability. Moderate disability

included total WeeFIM developmentalquotients of 50%–75%. Severe disabilityconsisted of WeeFIM DevelopmentalQuotients of �50%. Overall only 25% ofsurvivors were classified as functionallynormal. Severe disability occurred in53% and moderate disability in 22%. Lo-wen used a scripted telephone interviewand validated caregiver reports with bothmedical, neurological, and educationalinformation. She found that functionalassessment can provide a framework forunderstanding that the impact of inflictedhead trauma in infancy was more adversethan extreme prematurity or meningitis.

Example 5: Use of the VinelandAdaptive Behavior Scale or theWeeFIM in Congenital HeartDisease

Limperopoulos and her Montrealcolleagues examined functional assess-ment in children with congenital heartdisease receiving open heart surgery ininfancy [Limperopoulos et al., 2001]. In acohort of 118 survivors, 83% were fol-lowed at 18 months using the WeeFIMratings or VABS. For the WeeFIM, meanquotients were 84 in self-care, 77 in mo-bility, and 92 in social cognition. TheWeeFIM total quotient was 84. Only21% of the cohort was functioning inbasic skills, similar to peers. Moderatefunctional disability was noted in 37%,and severe functional disability in 6%.For the VABS, mean score for daily liv-ing skills was 84 and for socializationskills was 80. Functional difficulties indaily living skills were documented in40%, with more than half of the childrenhaving poor socialization skills. Factorsenhancing the risk for functional disabil-ities included perioperative neurodevel-opmental status, microcephaly, length ofdeep hypothermic circulatory arrest,length of stay in the intensive care unit,age at surgery, and maternal education.This study demonstrates that there werehigh prevalence rates of functional limi-tations even as early as 18 months thatsignificantly impacted on developmentand community care. In addition, thereare opportunities for prospectively exam-ining supports that enhance parent man-agement skills involving some of thesefunctional challenges.

CONCLUSIONIn an era of fragmented and often scarceresources for developmental surveillanceand child disability, assessment strategiesneed to be developed that capture com-municative, mobility, dexterity, self-care,peer interactions, and regulatory behav-iors (joint attention, sleep, play) as they

occur in usual activities. The advantageof functional assessment is that the con-sideration of special equipment or assis-tive devices can occur in completing atask. In functional assessment it is the taskperformance, not the process used toachieve the outcome, that is measured. Inaddition, functional assessment allows fora focus on the supports necessary for suc-cess in the classroom and in the commu-nity. Additional advantages of functionalassessment are that it is criterion-refer-enced, assesses typical performance, andcan be linked to population surveys. As atool it can facilitate a common languagefor describing child disability. In this eraof tremendous genetic, developmental,and neuroscience advances, our task isnot only to prevent disability wheneverpossible, but also to optimize outcomesof functional independence, family sup-ports, and community participation. f

ACKNOWLEDGMENTHerb Abelson, Paula Jaudes,

Nancy Schwartz, and Steve Goldsteinprovided ongoing support and a sharedvision of biopsychosocial commitmentsto children at risk medically or socially.Shelly Field was invaluable with editingand technical assistance. Emily Msall as-sisted in reference management.

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Measuring functional skills in preschool children at risk for neurodevelopmental disabilities