Simeonsson Et Al. 2003

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Applying the International Classification of

Functioning, Disability and Health (ICF) to

measure childhood disabilityR. J. SIMEONSSON{ M. LEONARDI{, D. LOLLAR},E. BJORCK-AKESSON}, J. HOLLENWEGER# andA. MARTINUZZI+*

{ School of Education & FPG Child Development Institute, CB #8185, UNC, Chapel Hill, NC

27599-8185, USA

{ Italian National Neurological Institute Carlo Besta, Milan, Italy. World Health

Organization, Geneva, Switzerland

} National Center on Birth Defects and Developmental Disabilities, Centers for Disease

Control and Prevention, Atlanta, Georgia, USA

} Malardalen University, Vasteras, Sweden# Pa dagogische Hochschule Zu rich, Department of Research and Development, Zurich,

Switzerland

+ E Medea, Conegliano Research Centre, Conegliano, Italy

Accepted for publication: May 2002

Abstract

The International Classification of Functioning, Disability andHealth-ICF addresses the broad need for a common languageand classification of functioning and disability. A parallel needis appropriate measures compatible with the content of theICF to document the nature and impact of limitations offunction, activities and participation. The interaction ofdevelopmental characteristics and disability among childrenrepresent special challenges for classification as well asmeasurement. Demographic trends emphasize the need foruniversal measures that encompass the components of the ICFand can be used in surveillance, screening and evaluation. Thispaper identifies issues related to application of the ICF tomeasure disability in childhood; reviews approaches and toolsto assess childhood disability and identifies priorities for thedevelopment of measures of functioning and disability inchildren based on the ICF. The development of measuresshould be framed within a framework of childrens rights andapplication of the biopsychosocial model to document profilesof functioning and disability of children.

Introduction

A mentally or physically disabled child should enjoy

a full and decent life in conditions which ensure

dignity, promotes self reliance and facilitates the

childs active participation in the community (UN

Convention on the Rights of the Child, 1989,

Art23.Sec1.)

The International Classification of Impairments,

Disabilities and Handicaps (ICIDH1) represented a

significant achievement at that time in several ways.

First, it advanced a new approach, conceptualizing

disability as the consequences of underlying health

conditions attributable to disease or injury. Second it

differentiated these consequences at three distinct planes

of human experience at the levels of body, person and

society. Third, by differentiating these terms concep-

tually and semantically, the ICIDH emphasized that

disability was not uni-dimensional but was manifested

at different levels of human functioning in the form of

impairments, performance limitations and the experi-

ence of disadvantage. Fourth, it provided a taxonomy

in which numeric codes could be used to document the

elements unique to each of the three levels with applic-ability for clinical and administrative purposes.

While the 1980 ICIDH raised awareness of the impor-

tance of distinguishing between disease and its conse-

quences in the form of disability, it was an

experimental document and not widely adopted as a

classification. Further, there was recognition that it* Author for correspondence;e-mail: [email protected]

DISABILITY AND REHABILITATION, 2003; VOL. 25, NO. 1112, 602610

Disability and Rehabilitation ISSN 09638288 print/ISSN 14645165 online # 2003 Taylor & Francis Ltdhttp://www.tandf.co.uk/journals

DOI: 10.1080/0963828031000137117


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was limited in a number of ways. The need to revise the

ICIDH was based on considerations related to policy,

concepts and application. From a policy perspective,

the need for a revision of the ICIDH could be seen as

reflecting the paradigm shift of disability from one based

on a medical framework toward one reflecting social

dimensions of disability. The disability advocacy move-

ment was supportive of defining disability in terms ofaccess restrictions. From a conceptual perspective, this

policy shift was paralleled by recognition of the crucial

role of the environment in defining human functioning.

This was evident in the negative reaction to the linear

and causal model presented in the 1980 ICIDH, linking

impairments, disabilities and handicaps without

accounting for the role of the environment. The ICIDH

framework was seen as too deterministic, failing to

reflect the dynamic nature of functioning and disable-

ment. A further conceptual issue pertained to framing

classification elements within the perspective of pathol-

ogy. Lastly, there were at least two practical concerns.

One was the overlap of content across the three levelsof the classification. A second was growing dissatisfac-

tion with the negative term and concept of handicap.

These and other factors provided the impetus for a

multi-year effort to revise the ICIDH in the 1990s.

The revision process addressed the identified shortcom-

ings of the ICIDH through the collective efforts of six

collaborating centers, three task forces and representa-

tives from various countries. Task forces addressed (a)

mental and behavioural issues, (b) environmental factors

and (c) childrens issues. The task force on children

generated recommendations for taxonomic entries rele-

vant for children and youth in the production of Beta

1 and Beta 2 versions of the ICIDH revision. With repre-

sentatives of collaborating centres and other task forces,

the childrens task force also participated in evaluation

activities of the revision versions of the ICIDH. The

result of the revision process was the International Clas-

sification of Functioning, Disability and Health-ICF

approved by the World Health Assembly in 2001.2

An essential requirement for implementing effective

health planning and intervention programmes for indivi-

duals with disabilities is a common language to docu-

ment components of functioning and development.

The ICF provides that common language and a univer-

sal standard to classify components of functioning anddisability. Paralleling recognition of the need for a

common classification has been recognition of the need

for appropriate measures to document the nature and

impact of these health conditions associated with perso-

nal and social limitations. The publication of the ICF

provides a unique opportunity to identity existing

assessment measures compatible with the content of

the ICF components as well as to identity instruments

that need to be developed based on the ICF framework.

The limited availability of measures based on an inter-

national taxonomy to assess functional limitations

among children has been recognized.3 Given the dispro-

portionate prevalence of disability in developing coun-

tries and the fact that children constitute the largestpercentage of those with functional and developmental

limitations,4 emphasizes the need for universal measures

that are brief and effective for use in surveillance and

screening. The purpose of this paper is to: (a) identify

issues related to application of the ICF to measure

disability in childhood (b) review selected assessment

measures of disability in childhood and (c) identify prio-

rities for the development of measures to assess dimen-

sions of functioning and disability in children based on

the ICF.

The revision process and development of the ICF

reflected a conceptual shift from a consequence of

disease classification to a components of health classifi-cation (p.2).2 This shift is evident in an examination of

the revised content of ICF. The classification encom-

passes functioning as universal human experience that

can be conceptualized and classified at three different

planes or dimensions: body function and structure, the

performance of personal activities and participation in

communal life. The facilitating or restricting role of

the environment at each of these planes is recognized

and can be classified as well. The intended uses of the

ICF include: (a) advancing science through a standard

nomenclature; (b) documenting intervention eligibility,

implementation and outcomes; (c) promoting planning

and policy initiatives and (d) defining individual rights

and societal responsibilities. The ICF provides major

coverage of the dimensions of body function and struc-

ture, of activities such as communication, mobility and

self-care and of participation such as work and civic life.

However, coverage of child characteristics is limited

requiring further consideration of functioning and

disability of children and their environments during

the developmental years.5

ISSUES IN MEASUREMENT OF CHILDHOOD DISABILITY

A key function of a classification system is its abilityto serve as a framework for the development of assess-

ment measures reflecting the specified dimensions of that

classification. The 1980 ICIDH saw some limited use in

this regard, however most of the applications covered

the dimension of Handicap and focused on adult popu-

lations. This was understandable given the fact that the

Applying international ICF to childhood disability

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Handicap dimension was in fact set up as a scale lending

itself to the development of measures such as the

London Handicap Scale6 and the CRAIG Chart.7 The

limited application of the 1980 ICIDH to measure

disability in childhood is consistent with its restricted

coverage of developmental and behavioural characteris-

tics of children.3, 8 The challenges of adapting the 1980

ICIDH for use with children were described in the devel-opment of an experimental scale to measure the dimen-

sion of handicap in young children.9 The limited utility

of the 1980 ICIDH to document disability in childhood

is demonstrated by the minimal coverage of indicators

relevant to children and youth in regard to play, learn-

ing and functioning at home and in school and neigh-

bourhood.3

With the publication of the ICF taxonomy, reflecting

a biopsychosocial model of disability, an important

priority is to examine its promise as a framework for

the development of assessment measures for children.

In addition to its promise as a taxonomy for coding

dimensions of disability, an important contribution ofthe ICF is that it can provide domains for assessment

as well as specific variables that can serve as items in

questionnaire and scale construction. To this end an

examination of the ICF as a guide for measurement of

disability in children requires a consideration of several

issues. Three issues of relevance to this paper are, (a)

differentiating components of childhood disability, (b)

identifying the purpose of measurement, and (c)

accounting for the mediating roles of developmental

and environmental factors on childhood disability.

Differentiating components of childhood disability

In scientific and policy contexts, definitions of child-

hood disability are often characterized by overlap of

health conditions, diagnoses or etiological factors. Simi-

larly, eligibility definitions often reflect a mixture of the

dimensions of impairments of body function and struc-

ture, activity limitations and restrictions of participa-

tion. Two legislative descriptions illustrate this overlap

of dimensions. In her discussion of childrens needs in

the UK, Braye10 reports that the Childrens Act of

1989 defines a child as . . . disabled if he is blind, deaf,

or dumb or suffers from mental disorder of any kind or

is substantially and permanently handicapped by illness,injury or congenital deformity or such other disability as

may be prescribed. A similar framework based on a

medical model is evident in the definition of children

with disabilities eligible for special education in the

USA. Under the 1997 Individuals with Disabilities

Education act,11 children with disabilities are identified

as (a) children with mental retardation, hearing

impairments, deafness, visual impairments including

blindness, deaf-blindness, multiple disabilities, speech

and language impairments, serious emotional distur-

bance, orthopaedic impairments, autism, traumatic

brain injury, other health impairments or specific learn-

ing disabilities; and (b) who by reason thereof, need

special education and related services. These two defini-tions from the UK and the USA illustrate that official

definitions designed to determine access to services often

encompass multiple components of disability. Viewed

within the framework of the ICF, the dimensions

covered in these definitions include etiology, health

conditions, disorders, impairments, activity limitations

as well as participation restrictions. A more efficient

approach for defining eligibility would be to focus on

the component that encompasses the childs needs for

services and supports. In the above two examples, the

nature of the childs needs reflect educational and social

support services. The focus for social interventions

would likely entail the dimension of participation.

Accounting for developmental and environmental factors

Another area for consideration in applying the ICF

builds on the person environment interaction implicit

in the paradigm shift from a medical to a broader bio-

psychosocial model of disability. As illustrated in Figure

1, a person environment interaction model requires a

consideration of the mediating role of developmental

and environmental factors. A central issue is that chil-

drens environments change dramatically across the

stages of infancy, early childhood, middle childhood

and adolescence. Each of these changes in the environ-

ments influences the childs interaction through stimula-

Figure 1 Modelling dimensions of functioning & disability:Child-Environment Interaction.

R. J. Simeonsson et al.

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tion and feedback. These interactions frame a develop-

mental process of the childs acquisition of increasingly

complex skills involving actions and reactions to the

physical and social environment. The influence of the

environment on the childs performance and functioning

is thus particularly important to document in this phase

of the life-span.

The significance of this interactive perspective hasbeen advanced by Helders et al.12 dynamic view of

disability for pediatrics, characterized by a shift of

emphasis from medical diagnosis to functional conse-

quences of health conditions. Within this perspective,

the focus is on approaching children with disabilities

in terms of addressing functional developmental

problems. Along a similar line, Stineman13 has proposed

a model of human-environment integration consistent

with a perspective of the persons interaction with the

environment. The emphasis of this model is to document

the individuals potential for meaningful physical and

mental activity.

Purpose of assessment

As for defining the purpose for measurement, a key

consideration is the epidemiological application of

surveillance and screening to determine the scope of

childhood disability. A primary goal of surveillance is

estimation of the prevalence of disability in the popula-

tion. In such applications, disability is often operationa-

lized in terms of activity limitations, rather than

impairments of body function or structures. A good

example of this emphasis is the analysis of the US

National Health Interview Survey data relating to child-

hood disability by Newacheck and Halfon.14 In that

study, disability was defined in terms of limitations in

major activities of play for preschool children and

school performance for older children respectively.

Based on these definitions, results indicated an overall

prevalence rate of childhood disability of 6.5%.

Another example of an epidemiological approach has

been described by Hoganet al.15 who obtained estimates

of functional limitations among 5 17 year-old US chil-

dren using data from the 1994 National Health Inter-

view Survey on Disability. With measures based on

combinations of items, estimates of disability were

12% for any limitation, 10.6% for learning, 5.5% forcommunication, 1.3% for mobility and 0.9% for self-

care. It was also found that 3.5% had two forms of

activity limitations and 1.1% had three or more. In a

subsequent study, incorporating additional national

survey data, Hogan et al.16 demonstrated that children

with functional activity limitations experienced higher

rates of unfavourable outcomes (limited family

resources, poorer health status, less healthy environ-

ments and limited access to health services).

In an international context, Durkin et al .17 have

developed a set of 10 questions to estimate the preva-

lence of childhood disability in several developing

countries. The Ten Questions measure included such

areas as seeing, hearing, walking and communication.Information was typically obtained from the mother

or the primary caregiver as the most knowledgeable

informant. The Ten Questions survey has been admi-

nistered in a number of countries including Bangala-

desh, Jamaica and Pakistan. Representative findings

from studies in Pakistan17 and Bangaladesh18 have

yielded prevalence estimates 1.9% and 0.9% for serious

mental retardation. The prevalence estimates for mild

mental retardation were 6.5% and 1.4% respectively.

While the validity of the estimates was not questioned,

differences in prevalence between the two countries

were considered to reflect possible differences in

mortality rates and cultural factors such as consangui-neous marriages.

Screening in order to identify children with disabil-

ities constitutes a related purpose for measurement.

Developmental screening is designed to identify chil-

dren for early intervention to promote the childs

development and reduce the risk for later disablement

and secondary conditions.1 9, 2 0 In a comprehensive

review of literature on this topic, Sonnander21 found

that developmental screening typically involved chil-

dren around the age of four with follow-up made in

the first year of school. The rate of identification

ranged from 1 6% with predictive rates for sensitivity

(45 72%) being lower than those for specificity (77

99%) of screening. While screening can identify chil-

dren for intervention, Sonnander concluded that the

process is complicated by the dynamic nature of child

development and screening instruments that are inade-

quate in capturing the complex nature of the childs

functioning. Selecting items for screening that are sensi-

tive indicators of disability in development is an impor-

tant task in applying the ICF for epidemiological

purposes.

NEED FOR MEASURES OF CHILDHOOD DISABILITY FOR USE

WITH THE ICF

Existing measures of childhood disability

A wide range of measures have been developed to

measure aspects of disability of children, some devel-

oped to assess the impact of specific conditions and


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others designed to capture core dimensions across

various conditions. It may be of interest to identify

measures of potential use to assess one or more of the

components of the ICF. These fourteen measures vary

in terms of coverage by age range, contents and admin-

istrative format. The measures are the Ten Questions,17

the ABILITIES Index,22, 23 the WeeFIM,24 the Parent

Evaluation of Development ScalePEDS,25

the GrossMotor Function MeasureGMFM,26, 27 the Cognitive

Adaptive Test/Clinical Linguistic and Auditory Mile-

stone ScaleCAT/CLAMS,28 the Questionnaire for

Identifying Children with Chronic Conditions

QUICCC,29 the Life Habits AssessmentLIFE-H,30

the Disability Scales for Childhood and Adolescent

InjuriesDSCAI,31 the Independent Behavior Assess-

ment Scale,32 the Educational Needs Questionnaire

ENS,33 the Short Sensory Profile-SSP,34 the Amount of

Assistance QuestionnaireAAQ35 and the Pediatric

Evaluation of Disability InventoryPEDI.36 While a

detailed analysis of the measures in terms of fit with

ICF content is outside the scope of this paper, there isbroad correspondence of the measures to one or more

ICF dimensions.

A review of the measures indicates that about half

can be used with children as young as 1 year of age

with some extending into the adolescent years. From

an administrative standpoint, four measures can be

completed by health professionals, whereas 10 involve

direct caregiver completion with or without an inter-

view. The comprehensiveness of the measures varies

substantially with the PEDI being made up of 237

items whereas the Ten Questions is based on 10 items.

Two of the measures, the PEDI and the Educational

Needs Questionnaire, address the domain of the envir-

onment by including content related to its role in modi-

fying activities and participation of the child. Most of

the measures are designed for clinical identification of

the nature and extent of childrens functional and

developmental needs. The Ten Questions and the

QuICCC have been used in household surveys and

may serve as models for further development of epide-

miological tools.

An important priority is the development of efficient

measures with potential utility as global tools with speci-

fic reference to the need for efficient measures in devel-

oping countries. In this regard, different measures arelikely to be needed for surveillance, screening, clinical

assessment for planning interventions and documenting

outcomes. To this end, the ICF can serve a very valuable

function as the standard of reference for defining

measurement domains and the development of efficient

instruments.

DEVELOPMENT OF MEASURES FOR USE WITH THE ICF

As a World Health Organization classification, the

ICF serves as the global standard for defining and docu-

menting disability. With the expanding emphasis on

evidence based health care in industrialized and develop-

ing countries,37 there is a corresponding need for func-

tional assessment measures for screening, clinicalassessment and outcome evaluation. The measures

reviewed above represent a selected sample of the variety

of instruments that have been developed to assess func-

tional limitations in children. The WHO Disability

Assessment Schedule has been revised in the form of

WHO-DAS II to reflect the new content of the ICF

(WHO, 2001), and has been used in studies with adult

psychiatric populations.38 The WHO-DAS II however,

does not purport to measure disability in children.

The development of measures specific to the ICF to

assess disability in children should be guided by several

considerations. A primary consideration is an approach

consistent within a framework of childrens rights. Ofequal importance is the translation of the biopsychoso-

cial model of disability in the practices for children.

Third, the goal for the development of measures should

be to capture profiles of individual differences of chil-

dren.

The publication of the UN Convention on the Rights

of the Child in 1989 provided the blue print for policy

making on childrens issues39 (p. 243). Key principles

underlying the convention include the childs rights to

be the first to receive services, to have their family

protected, to have a family environment, to be protected

from exploitation, and to receive education. While these

principles are often implicit in policies and practice, the

convention makes them explicit, constituting a universal

bill of rights for the child.

Viewed within a framework of universal standards, the

UN Convention on Rights for Children and the ICF

complement each other. One defines the rights of chil-

dren and the second provides the framework for docu-

menting the dimensions for which those rights are to

be carried out. These two universal documents are in

turn complemented by with Rule 2 (#3) of the UN Stan-

dard Rules for the Equalization of Opportunities, indi-

cating that a common level should serve as the basis

for equalization of opportunity for children as for adults.

Implementing a biopsychosocial model of disability

The advancement of the biopsychosocial model of

disability and recognition of the person environment

interaction is reflected in the broader perspective for


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defining not just the health of individuals but that of

groups and the role of environments.40 In such a view,

a priority needs to be assigned to assessment of the prox-

imal environments of home, school and community.

Arguing for primary paediatric care for children with

disabilities,41 has emphasized the problems of defining

childhood disability as well as obtaining reliable esti-

mates. His emphasis on management of children withdevelopmental manifestations of underlying health

conditions is consistent with the ICF model. The biopsy-

chosocial model of disability emphasizes that the needs

of persons with disabilities are not just medical but more

broadly, social, educational and functional in nature.42

In some instances it is important to recognize that medi-

cal treatments may be iatrogenic creating dependency

and thereby creating further disability and secondary

conditions.

Profiling individual differences

As individualization is central to the design and devel-opment of intervention plans for persons with disabil-

ities, a key component of clinical assessment is

measurement that can yield profiles of individual func-

tional characteristics. The dimensions for measurement

can incorporate basic neurophysiological processes as

well as mental and behavioural functions. Such an appli-

cation was described by Roux et al.43 in a study of 145

children with autism between 2 and 12 years of age.

Ratings were obtained on four dimensions; intellectual

impairment, language disorders, autistic behaviour and

measures of electrophysiological activity. Multivariate

analyses yielded five subgroups of children with distinct

bio-clinical profiles reflecting different combinations of

age, clinical indicators and electrophysiological data.

An important application of the ICF is that it can

contribute to the growing interest in identifying children

on the basis of functional profiles rather than diagnostic

labels. In this regard, various approaches have been

described in which functional profiles of individual chil-

dren or subgroups of children serve as the basis for iden-

tification. This approach is especially important in

education, where categorical identification of students

becomes barriers to intervention. For a child with speci-

fic instructional needs, knowledge about the childs

seeing function, language comprehension and learningability are important. Regardless of labels such as

mental retardation, deafness and cerebral palsy, all chil-

dren need much the same carefully planned steps in

learning how to read, write and solve problems.

Clinical description and documentation of changing

functional status over time or with treatment is another

purpose that needs to be considered in the development

of measures based on the ICF. This type of application

can be illustrated by a project of the American Academy

of Pediatrics to develop measures of functional status to

document outcomes of children with chronic conditions.

Sullivan and Olson44 have described the process for

developing such a measure for children with asthma.

Seven domains were identified for measurement withitems describing symptoms or functions rated on a 1

5 point scale. The domains encompassed the childs

physical symptoms and activity, the social activity of

the child and family, the emotional impact on child

and family and the utilization of health care. Comple-

tion of the scale by parents of 95 children between the

ages of 5 12 years of age provided good reliability for

five of the sub-scales. A useful step would be to examine

the correspondence of the items with the ICF domains

of body functions and structure, activities and participa-

tion. While many of the items in this scale were specific

to the condition of asthma, others were generic and may

be of value to consider in the development of measuresbased on the ICF for non-specific aspects of disability in

children.

Central to the derivation of profiles of individual

differences is comprehensive coverage of functional

characteristics and behaviours of children. In this

regard, Hack45 described the growing use of functional

measures of health status and QOL measures. Hack45

has also stressed the importance of distinguishing

between proximal neonatal impairments such as retino-

pathy of pre-maturity and distal impairments such as

cerebral palsy. In this context, there is need for compre-

hensive measures of child characteristics and a core data

set with specific reference to indicators defining the

nature and severity of disability among children and

youth with disabilities.

While the issue of comprehensive coverage of child

characteristics it is important across all periods of

childhood and adolescence, it is of particular concern

in the first years of the childs life. As we have noted

elsewhere5 references to the concepts of developmental

delay, developmental morbidity and developmental

vulnerability reflect recognition of the key role of early

identification and early intervention to prevent further

disablement. It is essential that the ICF provide cover-

age of characteristics and behaviours that are mani-fested in the early years. To this end, an examination

of areas for such coverage in the ICF and associated

measures is timely. Among areas of particular impor-

tance are those that reflect developmental progress in

the early childhood years when change is particularly

rapid. Representative candidates for expanded cover-


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age of the ICF are described below and summarized in

table 1.

In a review of atypical behaviour in children under

36 months of age, Mindle46 has described several char-

acteristics that may be useful to consider for inclusion

as categories in the ICF version for children with

implications for related measures. One of these relates

to organization and regulation of behaviour. Signifi-cant variation in this characteristic may take the form

of hypersensitivity to social or physical stimuli on the

one hand and to hypo-sensitivity and under-reaction

to stimuli on the other. A related characteristic is that

of sensory modulation in children.34, 47 At one end of

the continuum, problems are manifested in sensory

seeking behaviour in the form of excessive touching,

increased activity and physical movement. At the

other extreme, sensation avoiding behaviour is mani-

fested in aggressive and or anticipatory behaviour in

the form of somatic behaviours. These behaviours

have been differentiated on the basis of dysfunctional

modulation to tactile, vestibular and proprioceptivestimuli. Yet another aspect of problems of behaviour

regulation is that of stereotyped and self-injurious

behaviour. In a recent study of more than 450 young

children under 40 months of age served in interven-

tion programmes, Berkson, Tupa and Sherman48

found that 4.6% were characterized by stereotyped

and self-injurious behaviours.

Specific developmental issues

Some characteristics of children are very important to

document but represent a significant challenge to

measure. Pain is a particular case in point in young chil-

dren as well as children with severe disabilities.

McGrath and colleagues49 have noted that pain is a

common problem among children with severe cognitive

limitations. Given the childrens difficulty of self-expres-

sion, parents are the most obvious and reliable source of

information about the childs experience of pain.

Sleep problems are often a source of concern in chil-

drens development with significant variation of sleep

in terms of duration, pattern or latency to fall asleep.

Difficulties in going to sleep and staying asleep occur

with some frequency in children with severe disabil-

ities.50 In that sleep problems will have negative effects

on the child as well as the family, documentation of

the nature and severity of sleep problems is important

to incorporate in the development of functional assess-

ment measures. The fact that family factors may influ-ence the establishment and maintenance of sleep

problems of children reflects the interactive role of the

caregiving environment on child development and

disability.

Complementing the importance of documenting

child characteristics and behaviour is documentation

of the environment and its mediating role in disable-

ment. Within the framework of child-environment

interactions, Harkness and Super51 have advanced the

concept of the developmental niche to account for

the influence of the environment on the health status

of the child. To define the influence of the environmen-

tal factors, the developmental niche is characterized bythree components. The first component encompasses

the physical and social settings in which the child lives.

Those settings include not only the natural and built

environment but also the social and cultural practices

that might exacerbate the effects of disease transmis-

sion. Customs of child care and child rearing consti-

tute the second component. The third component is

defined by the psychology of the care providers, that

is, the values and beliefs that define parenting prac-

tices.

For many children with disabilities, a wide range of

mechanical or technological devices facilitate the childs

physical functioning, mobility, communication and

performance of personal tasks. Some children are

dependent on technology, needing support of medical

devices to compensate for impaired body functions.52

The fact that . . . more systematic, comprehensive and

causative data on technology dependent children are

urgently required (p. 332) has implications for the use

of the ICF to document characteristics of this low-inci-

dence group.

Table 1 Potential content areas for ICF for children and youth

Body function Body structures Activities & participation Environmental factorsQualifiers; inclusion/exclusion terms

Sensory modulationBehavioural regulationSelf-injurious behaviourStereotypesSleep problems

WastingStuntingFailure to thrivePrimary and

secondary dentition

Object and peer play;Pre-verbal communication;Imitation;Caregiver-child interactionEarly motor activity

Developmental niche;physical and socialsettings, customs,psychology of caregivers

Technology dependence

Reduction of size;Delayed or precocious

emergence


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Measurement issues

Several issues can be identified related to measure-

ment format in the application of the ICF. One of these

is the challenge of assessing children who are limited in

their ability to respond to measures or unable to convey

information regarding their own experience. A related

problem is the reliance on parents and caregivers asproxy responders for the child. As illustrated previously

in the study by Sullivan and Olson44, their measure relied

on proxy reports of parents. An important priority is the

development of measures that can directly capture the

personal experiences and reports of children through

interview or observation.

The utility of a restricted number of questions to

identify children with severe disability has been exam-

ined in epidemiological17 as well as clinical studies.53

In the study by Fooks53, infants who received fresh

frozen plasma for intra-ventricular haemorrhage in

the neonatal period were followed up at 2 years of

age based on their assignment to four disability cate-gories: (a) cerebral palsy; (b) developmental quotient

two standard deviations below the mean; (c) blindness

or reduced vision, and (d) hearing loss or using a hear-

ing aid. A 29-item questionnaire was administered to

clinicians in the study before the infants were 2 years

of age. On the basis of that questionnaire, a reduced

set of questions was identified that maximized the

assignment of children to the four disability categories.

Four questions were found to identity 56 of 61 children

with severe disability and yielded a screening specificity

value of 98.4%. The incidence of disability based on

the four questions was 12.7% versus 12.2% based on

evaluation by the clinician. In terms of domains of

the ICF, three of the questions (motor; vision; hearing)

are consistent with content of Body Function/Struc-

tures. The fourth question related to behaviour and

seems consistent with the Activities domain. The find-

ings of this study support the search for a limited set

of indicators that can effectively identify children with

disabilities. In concert with the content areas reviewed

earlier, it is important that such indicators are develop-

mental in nature.

Conclusion

The publication of the ICF followed that of the

Convention on the Rights of the Child by more than a

decade. If Convention principles are formalized in

national laws and policies, the ICF holds promise as a

means whereby the lived aspects of those rights can be

documented. This means that in practice, the unique,

developmental needs of children with impairments of

function, activity limitations and restrictions of partici-

pation in community life should be documented and

met through environmental accommodations and the

provision of support. The issues reviewed in this paper

have identified areas for consideration to enhance the

use of the ICF in policy and practice with children. To

that end, the ICF can serve as a universal standard torealize the rights of children with disabilities under the

UN Convention on the Rights of the Child.

References

1 World Health Organization. International Classification of Im-pairments, Disabilities and Handicaps. 1980; Functioning. Geneva:World Health Organization.

2 World Health Organization. International Classification of Func-tioning, Disability and Health, Geneva. 2001; World Health Org-anization.

3 Simeonson RJ, Lollar DJ, Hollowell J, Adams M. Revision of theinternational classification of impairments, disabilities and handi-caps: developmental issues. Journal of Clinical Epidemiology 2000;53: 113 124.

4 Helander EAS. Prejudice and dignity: an introduction to commu-nity based rehabilitation. 1993; New York: United NationalDevelopment Programme.

5 Simeonsson RJ, Leonardi M, Bjorck-Akesson E, Hollenweger J,Lollar DJ, Brown SC, ICY task force. International classificationof functioning, disability and health: toward a universal classifica-tion of disability in childhood. Under review: Social Science &Medicine.

6 Harwood RH, Rogers A, Dickinson E, Ebrhaim S. Measuringhandicap: the London Handicap Scale, a new outcome measure forchronic disease. Quality in Health Care 1994; 3(1): 11 16.

7 Whiteneck GG, Charliefue SW, Gearhart KA, Overholser JD,Richardson GN. Quantifying handicap: a new measure of long-

term rehabilitation outcomes. Archives of Physical Medicine andRehabilitation 1992; 73: 519 526.8 Ferngren H, Lagergren J. Classification of handicaps in 6 7-year-

old mentally retarded children. Usefulness and inter-observeragreement of a child adapted handicap code of WHOs ICIDH.International Disability Studies 1990; 10(4): 155 158.

9 Diderichsen J, Ferngren H, Hansen FJ, Lindman C, Kallio T,Lagergren J, Lou H, Sjogren O. The handicap code of the ICIDH,adapted for children aged 6 7 years. Classification Group of theNordic Neuropediatric Association.International Disability Studies1990; 12: 54 60.

10 Braye S. Disabled children and social care: law. In: J Cooper, (ed.)Law, Rights and Disability London: Jessica Kingsley PublishersLtd. 2000.

11 Individuals with Disabilities Education Act Amendments of 1997.Pub. L. No. 105 17.

12 Helders PJ, Engelbert RH, Gulmans VA, Van Der Net J.Paediatric rehabilitation.

Disability and Rehabilitation 2001;

23(11): 497 500.13 Stineman MG. Defining the population, treatment and outcome of

interest: Reconciling the rules of biology with meaningfulness.American Journal of Physical Medicine & Rehabilitation 2001; 80:147 159.

14 Newacheck PW, Halfon N. Prevalence and impact of disablingchronic conditions in childhood.American Journal of Public Health1998; 88(4): 610 617.


609


9/10

15 Hogan DP, Msall ME, Rogers ML, Avery RC. ImprovedDisability population estimates of functional limitation amongAmerican children aged 5 17.Maternal and Child Health Journal1997;1: 203 216.

16 Hogan DP, Rogers ML, Msall ME. Functional limitations and keyindicators of well-being in children with disability. Arch PediatrAdolesc Med2000; 154(10): 1042 1048.

17 Durkin MS, Hasan ZM, Hasan KZ. Prevalence and correlates ofmental retardation among children in Karachi, Pakistan.AmericanJournal of Epidemiology 1998; 147(3): 281 288.

18 Zaman SS, Kahn NZ, Islam S, Banu S, Dixit S, Shrout P, DurkinM, Zaman. Validity of the ten questions for screening seriouschildhood disability: results from urban Bangladesh. InternationalJournal of Epidemiology 1993; 19(3): 613 620.

19 Lollar DJ. Preventing secondary conditions associated with spinabifida or cerebral palsy: proceedings and recommendations of asymposiumWashington DC: Spina Bifida Association of America1994.

20 Simeonsson RJ, McDevitt L. Disability & Health: the Role ofSecondary Conditions and Quality of Life Chapel Hill, NC:University of North Carolina,1998.

21 Sonnander K. Early identification of children with developmentaldisabilities.Acta Paediatrica Supplement 2000; 89(434): 1723.

22 Simeonsson RJ, Bailey DB, Smith T, Buysse V. Young childrenwith disabilities: functional assessment by teachers. JournalDevelopmental and Physical Disabilities 1995; 7: 267 284.

23 Simeonsson RJ, Chen J, Hu Y. Functional assessment of Chinese

children with the ABILITIES Index. Disability and Rehabilitation1995;17: 400 410.

24 Leonard H, Fyfe S, Leonard S, Msall M. Functional status,medical impairments, and rehabilitation resources in 84 femaleswith Rett syndrome: a snapshot across the world from the parentalperspective.Disability and Rehabilitation 2001; 23(3/4): 107 117.

25 Glascoe FP. Using parents concerns to detect and addressdevelopmental and behavioural problems. Journal of SocialPediatric Nursing1999; 4(1): 24 35.

26 Russell DJ, Rosenbaum PL, Cadman DT, Gowland C, Hardy S,Jarvis S. The gross motor function measure: a means to evaluatethe effects of physical therapy. Developmental Medicine & ChildNeurology1989; 31(3): 341 352.

27 Nordmark E, Hagglund G, Jarnlo GB. Reliability of the grossmotor function measure in cerebral palsy. Scand J Rehabil Med1997;29(1): 25 28.

28 Kube DA, Wilson WM, Peterson MC, Palmer FB. CAT/CLAMS:

Its use in detecting early childhood cognitive impairment. PediatricNeurology2000; 23(3): 208 215.

29 Stein RE, Westbrook LE, Bauman LJ. The questionnaire foridentifying children with chronic conditions: A measure based on anoncategorical approach.Pediatrics 1997; 99(4): 513 521.

30 Lepage C, Noreau L, Bernard P, Fougerollas P. Profile of handicapsituations in children with cerebral palsy. Scandinavian Journal ofRehabilitation Medicine1998; 30: 263 272.

31 Gofin R, Hass T, Adler B. The development of disability scales forchildhood and adolescent injuries. Journal of Clinical Epidemiology1995;48(7): 977 984.

32 Munir SZ, Zaman S, McConachie H. Development of anindependent behavior assessment scale for Bangladesh. Journal ofApplied Research in Intellectual Disabilities 1999; 12(3): 241 252.

33 Dyson M, Allen F, Duckett S. Profiling childhood disability: Thereliability of the educational needs questionnaire. Evaluation andProgram Planning2000; 23: 177 185.

34 Mangeot SD, Miller LJ, McIntosh DN, McGrath-Clarke J, SimonJ, Hagerman R, Goldson E. Sensory modulation dysfunction inchildren with attention-deficit-hyperactivity disorder. Developmen-tal Medicine and Child Neurology 2001; 43: 399 406.

35 Ottenbacher KJ, Msall ME, Lyon N, Duffy LC, Ziviani J, GrangerCV, Braun S. Functional assessment and care of children withneurodevelopmental disabilities. American Journal of PhysicalMedicine and Rehabilitation 2000; 79(2): 114 123.

36 Haley S, Coster W, Fass R. A content validity study of thePediatric Evaluation of Disability Inventory. Pediatric PhysicalTherapy 1991; 3: 177 184.

37 Patel V. The need for treatment evidence for common mentaldisorders in developing countries. Psychological Medicine 2000;30(4): 743 746.

38 Vasquez-Barquero JL, Vasquez Bourgon E, Herrera Castanedo S,Saiz J, Uriarte M, Morales F, Gaite L, Herran A, Ustan TB.Spanish version of the new World Health Organization DisabilityAssessment Schedule II (WHO-DAS-II): initial phase of develop-ment and pilot study. Actas Espanolas de Psiquiatria 2001; 28(2):7787.

39 Melton GB. Preserving the dignity of children around the world:the U.N. convention on the rights of the child. Child Abuse andNeglect1991; 15: 345 350.

40 Mann KJ. Looking ahead. Disability and Rehabilitation 1997;19(4): 171 173.

41 Cooley WC. Responding to the developmental consequences ofgenetic conditions: The importance of pediatric primary care.American Journal of Medical Genetics 1999; 89(2): 75 80.

42 Neville B. Tertiary paediatrics needs a disability model.Archives ofDisease in Childhood2000; 83(1): 35 38.

43 Roux S, Bruneau N, Garreau B, Guerin P, Adrien JL, Dansart P,

Gomot M, Barthelemy C. Bioclinical profiles of autism and otherdevelopmental disorders using a multivariate statistical approach.Biological Psychiatry1997; 42(12): 1148 1156.

44 Sullivan SA, Olsen LM. Developing condition-specific measures offunctional status and well-being for children. Clinical Performance& Quality Health Care 1995; 3(3): 132 139.

45 Hack M. Consideration of the use of health status, functionaloutcome, and quality of life to monitor neonatal intensive carepractice.Pediatrics1999; 103(1): 319 328.

46 Minde K. Behavioral abnormalities commonly seen in infancy.Canadian Journal of Psychiatry 1988; 33: 741 747.

47 McIntosh DN, Miller LJ, Shyu V, Hagerman RJ. Sensory-modulation disruption, electrodermal responses, and functionalbehaviors. Developmental Medicine and Child Neurology 1999;41(9): 608 615.

48 Berkson G, Tupa M, Sherman L. Early development of stereotypedand self-injurious behaviors: I. Incidence. American Journal of

Mental Retardation2001; 106(6): 539 547.49 McGrath PJ, Rosmus C, Canfield C, Campbell MA, Hennigar A.

Behaviours caregivers use to determine pain in non-verbal,cognitively impaired individuals.Developmental Medicine and ChildNeurology 1998; 40(5): 340 343.

50 Diddeen R, Curfs LM, Sikkema SP, De Moor J. Functionalassessment and treatment of sleeping problems with developmen-tally disabled children: six case studies.Journal of Behavior Therapyand Experimental Psychiatry1998; 29(1): 85 97.

51 Harkness S, Super CM. The developmental niche: A theoreticalframework for analyzing the household production of health.Social Science & Medicine 1994; 38: 217 226.

52 Glendinning SK, Guiffrida A, Lawton D. Technology-dependentchildren in the community: definitions, numbers, and costs. Child:Care, Health, and Development 2001; 27(4): 321 334.

53 Fooks J. Four key questions that identify severe disability.Archivesof Disease in Childhood1999; 80: 67 68.


610


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