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Guscia, Roma, Ekberg, Stuart, Harries, Julia, & Kirby, Neil(2006)Measurement of environmental constructs in disability assessment instru-ments.Journal of Policy and Practice in Intellectual Disabilities, 3(3), pp. 173-180.

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https://doi.org/10.1111/j.1741-1130.2006.00077.x

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Measurement of Environmental Constructs in Disability Assessment Instruments

Roma Guscia, Stuart Ekberg, Julia Harries & Neil Kirby

Department of Psychology, University of Adelaide, Adelaide, South Australia, Australia

The International Classification of Functioning, Disability and Health (ICF) assumes a biopsychosocial basis for disability and provides a framework for understanding how environmental factors contribute to the experience of disability. To determine the utility of prevalent disability assessment instruments, the authors examined the extent to which a range of such instruments addressed the impact of environmental factors on the individual and whether the instruments designed for different disability groups focused differentially on the environment. Items from 20 widely used disability assessment instruments were linked to the five chapters of the ICF environment component using standardized classification rules. Nineteen of the 20 instruments reviewed measured the environment to varying degrees. It was determined that environmental factors from the Natural Environment and Attitudes chapters were not well accommodated by the majority of instruments. Instruments developed for people with intellectual disabilities had the greatest environmental coverage. Only one instrument provided a relatively comprehensive and economical account of environmental barriers. The authors conclude that ICF classification of environmental factors provides a valuable resource for evaluating the environmental content of existing disability-related instruments, and that it may also provide a useful framework for revising instruments in use and for developing future disability assessment instruments.

Keywords: assessment, disability, environment, support

Correspondence: Roma Guscia, Department of Psychology, University of Adelaide, North Terrace, Adelaide, South Australia 5005, Australia. Telephone: +61 8 8303 5849; Fax: +61 8 8303 3770; Email: roma.guscia@adelaide.edu.au

Author Note: This study is part of a larger Linkage research project jointly funded by the Australian Research Council and the Office of Disability and Client Services of the South Australian Department for Families and Communities.

Background In the past three decades, a new conceptual framework has emerged to describe and facilitate a more holistic understanding of the experience of disability. Unlike prior conceptions, in which individual deficits were regarded as the primary determinant of disability, the new paradigm locates the experience of disability within the broader social milieu in which aspects of the social, physical, and attitudinal environments are equally important in giving rise to the disablement process (Kearney & Pryor, 2004; WHO, 2001). During the early 1980s, two major events helped change this perception of disability (Hurst,

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2003). In 1980, the World Health Organization (WHO) released the International Classification of Impairments, Disabilities, and Handicaps (ICIDH) and in 1981, the International Year of Disabled Persons facilitated calls for the universal rights of people with disabilities. Each of these events, in differing ways, began to challenge the notion that the deficit or medical model encapsulated the entire phenomenon of disability. The ICIDH attempted to capture the social element within its classification system under the term “handicap,” denoting the social disadvantages experienced by people as a result of their impairments and disabilities (WHO, 1980). The major criticism of the ICIDH was that, although it acknowledged the importance of social factors, it continued to uphold the one-way causal model of disablement by implying that impairments lead to disabilities and these two factors in combination with social elements give rise to handicaps (Bickenbach, Chatterji, Badley, & Üstün, 1999; Gething, 1997). This meant that disability remained an experience that, while manifested in a social environment, was ultimately a derivative of a personal state of being (Hurst, 2003). Due to criticism of the ICIDH, its succeeding version, the International Classification of Functioning, Disability and Health (ICF; WHO, 2001), modified the fundamental principles underlying the social approach (De Kleijn-De Vrankrijker, 2003). It is the first internationally recognized classification system to fully embrace both the social and medical models of disability in what is now described as the biopsychosocial model (Üstün, Chatterji, Bickenback, Kostankjsek, & Schneider, 2003). The aim of the ICF and the biopsychosocial model on which it is based, is to offer a standard approach to understanding the state and components of health in all people while also giving consideration to the way in which aspects of the environment influence a person’s experience of disability (WHO, 2001). Applications of the ICF include, but are not limited to: collection and recording of population health and disability data; measurement of intervention outcomes; needs assessment; rehabilitation outcome evaluation; and policy design and implementation (WHO, 2001). The classification structure of the ICF is organized into two parts, each representing two components. Part 1, Functioning and Disability, comprises Body Functions and Structures, and Activities and Participation. Body Functions are “the physiological functions of body systems (including psychological functions),” and Body Structures are the “anatomical parts of the body such as organs, limbs and their components.” The second component of part 1, Activities and Participation, involves both “the execution of a task or action by an individual” (i.e., Activity) and “the involvement in a life situation” (i.e., Participation) (WHO, 2001, p. 10). Part 2, Contextual Factors, comprises Environmental Factors that “make up the physical, social and attitudinal environment in which people live and conduct their lives” (WHO, 2001, p. 10), and Personal Factors, such as age, sex, race, lifestyle, etc., that are not classified within the ICF due to the large number of differences that exist between individuals. An outline of the ICF chapters is provided in Table 1.

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Table 1: International Classification of Functioning, Disability and Health chapters Chapter Example

Part 1: Functioning and Disability

Body Functions (8 chapters)

Mental functions; sensory functions and pain; voice and speech functions; functions of the cardiovascular, hematological, immunological and respiratory systems; functions of the digestive, metabolic and endocrine systems; genitourinary and reproductive functions; neuromusculoskeletal and movement-related functions; functions of the skin and related structures.

Body Structures (8 chapters)

Structures of the nervous system; the eye, ear and related structures; structures involved in voice and speech; structures of the cardiovascular, immunological and respiratory systems; structures related to the digestive, metabolic and endocrine systems; structures related to the genitourinary and reproductive systems; structures related to movement; skin and related structures.

Activities and Participation (9 chapters)

Learning and applying knowledge; general tasks and demands; communication; mobility; self-care; domestic life; interpersonal interactions and relationships; major life areas; community, social and civic life.

Part 2: Contextual Factors

Environmental Factors (5 chapters)

Products and technology; natural environment and human-made changes to environment; support and relationships; attitudes; services, systems and policies.

Personal Factors (not classified)

The dynamic interaction between health conditions and environmental factors characterize a person’s state of functioning and disability (WHO, 2001). What is socially determined as “normative” health, results when body functions and structures operate in a manner that allows Activities (execution of a task or action by an individual) and Participation (involvement in life situations) within an individual’s environment (WHO, 2001). The negative alternate to this is impairment (reduction, loss, excess, or deviation of body function and structure), which leads to some activity limitation or participation restriction within a particular environment (WHO, 2001). While the environment is often thought of in terms of its impact on people with physical disabilities and their requirement for assistive devices and modifications to the physical environment (e.g., wheelchairs and ramps), people with intellectual and other disabilities can also be affected by aspects of the environment. For example, Jacobson (2003) employed the ICF classification in describing the impact of the environment on a former client who experienced “severe barriers in terms of immediate family, extended family and friend involvement in his life and mild barriers associated with personal care providers who did not initiate and maintain interventions to assist him...Prevailing housing systems and policies also hindered his participation by delaying his movement to a more typical community residential situation” (Jacobson, 2003, p. 517). This case study illustrates the importance of how an assessment of the environment can assist in identifying and targeting intervention strategies both at a practice level (i.e., in terms of the provision of appropriate personal care workers), and at a policy level (i.e., in terms of appropriate and inclusive housing policies). Schneidert, Hurst, Miller, and Üstün (2003) argue that “in a context where the physical environment is accessible, social attitudes and norms are positive and policies and services are inclusive in their approach, this experience of disability would not arise” (p. 589).

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Since the publication of the ICF in 2001, much research has been generated with respect to its utility as a classification system across the broad range of health-related disciplines. While some of this research has been dedicated to an examination of how health-related assessments relate to the ICF framework (Cieza et al., 2002; Granlund, Eriksson, & Ylvén, 2004; Perenboom & Chorus, 2003), little detailed attention has been given to the measurement of “Contextual Factors,” specifically the environment (AIHW, 2005; Howe, Worrall, & Hickson, 2004; Tate & Pledger, 2003; Whiteneck et al., 2004). The current study investigates the extent to which widely used disability assessment instruments are capable of addressing the biopsychosocial approach to disability in terms of the impact of the environment on individuals with disabilities. To do this, each instrument was assessed in terms of its ability to accommodate the framework of the wide range of environmental constructs that have been classified in the ICF. It also seeks to explore whether a differential focus on environmental factors is evident between instruments designed for different disability types. As the aim of many widely used disability assessment instruments is to identify individual service needs, intervention strategies, and the resources required for achieving these outcomes, consideration is also given to the way in which these instruments assess relevant aspects of the environment, that is, in terms of a barrier or facilitator.

Method Materials Twenty disability measures of support, functioning, or adaptive behavior were selected from a total of 33 instruments used for disability-sector resource allocation and/or service planning in Australia, the United Kingdom, and the United States and identified through a review of the literature. To be included in the study, instruments had to: be currently and widely used at least in their country of origin; have some form of reliability greater than 0.6; and be easily obtained from the publisher or author. Six of the 20 instruments were developed for people with intellectual disabilities; six for people with acquired brain injury or physical disabilities; five for people with mental health issues; two for people with mental health issues and an intellectual disability; and one for use with all disability types. Seventeen of the instruments were designed to assess a person’s level of functioning and/or needs using a proxy assessment approach while the remaining three also had a self-report option. A listing of these instruments, their abbreviations, and associated references is provided in Table 2.

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Table 2: Instruments and number of environmental constructs across ICF chapters Instrument name, abbreviation, and reference P&T N E S&R Att SS&P Total

Intellectual disability Client Development Evaluation Report (CDER) (CDDS,

1986) 3 1 1 5

Developmental Disabilities Profile (DDP) (IBDDS, 2001) 5 4 3 4 16 Developmental Disabilities Support Needs Assessment

Profile (DD-SNAP) (Hennike, Myers, Realon, & Thompson, 2002)

1 3 4

Inventory for Client and Agency Planning (ICAP) (Bruininks, Hill, Weatherman, & Woodcock, 1986)

4 3 4 11

Personal Capacity Inventory (PCI) (Moseley, Gettings, & Cooper, 2003)

3 3 1 7

Supports Intensity Scale (SIS) (Thompson et al., 2004) 1 1 Acquired brain injury/physical

Barthel Index (BI) (Mahoney & Barthel, 1965) 2 1 3 Craig Handicap Assessment and Reporting Technique

(CHART) (Whiteneck, Charlifue, Gerhart, Overholser, & Richardson, 1992)

7 1 8

Disability Rating Scale (DRS) (Rappaport, Hall, & Hopkins, 1982)

1 2 3

Functional Independence Measure (FIM) (Granger, 1998)

3 1 4

Mayo-Portland Adaptability Inventory – 4 (MPAI-4) (Lezak & Malec, 2003)

1 1

Resource Utilization Groups – ADL (RUG-ADL) (Fries & Schneider, 1994)

2 1 3

Mental health Camberwell Assessment of Need (CAN) (Slade,

Thornicroft, Loftus, Phelan, & Wykes, 1999) 3 3

Health of the Nation Outcome Scales (HoNOS) (Wing, Curtis, & Beevor, 1999)

2 1 2 5

Health of the Nation Outcome Scales – Child and Adolescent (HoNOSCA) (Gowers et al., 1999)

3 2 1 6

Health of the Nation Outcome Scales – 65+ (HoNOS-65+) (Burns et al., 1999)

3 2 1 2 8

Life Skills Profile (LSP) (Parker, Rosen, Emdur, & Hadzi-Pavlov, 1991)

0

Dual diagnosis Camberwell Assessment of Need for Adults with Developmental and Intellectual Disabilities (CANDID) (Xenitidis, Slade, Thornicroft, & Bouras, 2003)

1 2 4 7

Health of the Nation Outcome Scales for people with Learning Disabilities (HoNOS-LD) (Roy, Matthews, Clifford, Fowler, & Martin, 2002)

1 3 1 5

Generic Service Need Assessment Profile (SNAP) (Gould, 1998) 3 2 1 6

Total 39 0 36 7 24 106 ICF classifications represented 13 0 6 5 11

ADL = Activities of Daily Living; P & T = Products and Technology; N E = Natural Environment; S & R = Support and Relationships; Att = Attitudes; S S & P = Services, Systems and Policies; ICF = International Classification of Functioning, Disability and Health.

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Procedure Prior to the work undertaken in the present study, an interrater reliability study of item mapping was undertaken by the first and third authors. Items from three assessments, the ICAP, SNAP, and SIS, were independently linked to the Activities and Participation component of the ICF by each rater. An acceptable level of percentage agreement was obtained (ICAP, 63.5; SNAP, 65; and SIS, 83.3) consistent with other inter-rater research on linking health-status items to the ICF (Battaglia et al., 2004; Cieza et al., 2002; Granlund et al., 2004; Ogonowski, Kronk, Rice, & Feldman, 2004). The first author coded all assessment instrument items that measured environmental constructs against categories contained within the five environmental chapters of the ICF. The first chapter, Products and Technology, includes any product, equipment, or technology adapted or designed specifically for enhancing the functioning of a person with a disability. The second chapter, Natural Environment, encapsulates the natural environment, including human-made changes to that environment, and the characteristics of human populations accommodated within that environment. Examples include physical geography, human-caused events, climate, and air quality. The third chapter, Support and Relationships, describes the physical and emotional support and relationships that people or animals provide to others, in their home, work, or school. Chapter 4, Attitudes, includes the attitudes held by different individuals such as immediate family, friends, health professionals, care workers, etc. that influence individual behavior and actions. The final chapter, Services, Systems and Policies, includes services, systems, and policies pertaining to factors such as housing, transportation, Social Security, and education (WHO, 2001). Rules for linking items to the ICF, established by Cieza et al. (2002), were used to inform the linking process. For example, all constructs within items and response options were linked to the most specific ICF category. Where a single item contained more than one construct, each of these constructs was linked to the corresponding ICF category. For example, item 12 of the HoNOS, “Problems with occupation and activities,” asks the rater to consider the lack of tolerance of others as well as the availability of professional support. The lack of tolerance of others was coded to the ICF Attitudes chapter, and the availability of professional support was coded to the Support and Relationships chapter. Where response options of an item contained additional constructs, these were also linked. For example, item 38 of the DDP refers to a person’s need for Assistive Technology – this was coded to the ICF Products and Technology chapter. The response options associated with this item included other constructs such as barriers to the person’s use of Assistive Technology as a result of “opinions or beliefs of person’s family” – this was coded to the ICF Attitudes chapter. Constructs more detailed than the corresponding ICF classification were linked to the “other specified” ICF category. For example, the DD-SNAP asks about the presence of “natural supports” defined as “substantial support from a friend, family member or guardian, who does not receive compensation from the developmental disabilities service delivery system.” This distinction is not made within the ICF classification system, and so was classified within the “other specified” category of the Supports and Relationships chapter. Constructs too general to be linked to a specific ICF category were classified in the “unspecified” category of the ICF. For example, the SIS asks about the support a person needs to achieve a range of daily activities, but does not give any detail as to who provides

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the support. This was linked to the “unspecified” category of the ICF Support and Relationships chapter. Comparisons were made across all instruments in terms of the total number of constructs identified and their relative coverage of ICF classifications across chapters. Similar comparisons were made between assessments developed for use with different disability groups (Intellectual, Acquired Brain Injury/Physical and Mental Health). The structure of response options was also considered in terms of whether they allowed for the direct measurement of the environment as a barrier or facilitator.

Results Many instrument items and response options contained multiple environmental constructs. Accordingly, reference is made to the number of environmental constructs within an instrument rather than the number of items, which fails to capture the complexity of some of the instruments. Because of the relatively small number of instruments reviewed, only descriptive statistics were used. Coverage of ICF Chapters Table 2 lists the instruments and their relative coverage across ICF chapters. It can be seen that environmental factors included within the Products and Technology chapter had the greatest coverage, with a total of 39 constructs linked to this chapter. The Support and Relationships chapter had the next best coverage, with 36 constructs identified, followed by Services, Systems and Policies with 24 constructs, Attitudes with seven constructs, and Natural Environment with no construct coverage. The relative coverage of the total pool of items available within each of the five ICF chapters is given in the final row of Table 2. As can be seen, although a total of 39 constructs were linked to the Products and Technology chapter, only 13 of 67 possible ICF classifications were represented by the instruments. The Support and Relationships chapter, with a total of 36 constructs linked, represented six of the 13 possible ICF classifications. Attitudes represented five of 14 potential classifications, and 11 of 110 possible classifications were represented in the Services, Systems and Policies chapter. Within each of these chapters, some constructs were covered with a greater frequency than others. For example, adaptive equipment for mobility (e1201), communication (e1251), and daily living (e1151) were most frequently covered in the Products and Technology chapter. The most commonly linked classification in the Support and Relationships chapter was the support and relationships unspecified category (e399), followed by support from health professionals (e355), personal carers (340), and other professionals (e360). Attitudes of family (e410) and personal care providers (e440) were most prevalent in chapter 4. Housing (e525), transport (e540), and health services (e580) were most commonly addressed in the Services, Systems and Policies chapter. Individual instrument coverage of ICF environmental factors ranged from no constructs for the LSP to 16 constructs for the DDP. The DDP along with the HoNOS65+ had the most coverage across chapters, each covering all but one of the five ICF environmental chapters, Natural Environment. The level of coverage obtained by the DDP was due to the relatively

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comprehensive yet economical approach used within this instrument to rate items associated with environmental factors. The DDP provides multiple response options and through the use of qualifying keys, can be used to add explanatory complexity in response to questions about the utilization of various health services. For example, item 38 of the DDP refers to the person’s utilization of 10 different health services. The rater is asked to use two different qualifying keys with a range of response options to: first, indicate the frequency of health service utilization (selecting from six response options, including daily, weekly, monthly, etc.), and second, indicate factors preventing service utilization (selecting from eight response options, such as “opinions and beliefs of person’s family” or “service provider will not accept person’s insurance”). Level of Specificity within ICF Environmental Chapter The hierarchical framework of the ICF allows for different levels of classification. According to the rules for linking, “Each item of a health-status measure should be linked to the most precise ICF category” (Cieza et al., 2002, p. 206). In total, 106 environmental constructs were linked. The majority of these constructs contained sufficient detail to enable a precise link to an ICF category. However, there were 22 instances where the construct was more general than the corresponding ICF category and could only be linked to an “unspecified” ICF category. Sixteen of these occurred in the Support and Relationships chapter. In six cases, two instruments (CHART and DD-SNAP) contained an environmental construct not explicitly stated or described by the ICF, and these constructs were accordingly linked to the “other specified” category. The CHART had four items assessing potential barriers that might arise when trying to access transportation. For example: “Can you use your transportation independently?”; “Does your transportation allow you to get to all the places you would like to go?”; “Does your transportation let you get out whenever you want?”; and “Can you use your transportation with little or no advance notice?” DD-SNAP had one item asking about the frequency of “maintenance requirements of any adaptive equipment” and another item asking about the presence of “natural supports” defined as “substantial support from a friend, family member or guardian, who does not receive compensation from the developmental disabilities service delivery system.” Variations across Assessments Related to Disability Genre There were observed differences found between the assessments representing different disability groups in terms of the number of constructs linked and coverage across chapters. The six assessments developed for people with intellectual disabilities had the higher total number of environmental constructs (44) as compared with the other two groups, Mental Health (22) and Acquired Brain Injury/Physical (21). There was also a differing focus between assessment groups in chapter coverage. The intellectual disability group of assessments covered all ICF chapters except the Natural Environment: Products and Technology and Support and Relationships shared approximately equal coverage (16 and 15, respectively); Services, Systems and Policies had a total of 10 constructs; and Attitudes had three. Mental Health assessment instruments also covered all ICF chapters except Natural Environment, but with a different focus. Services, Systems and Policies and Support and Relationships were best covered with a total of 8 and 7 environmental constructs, respectively. This was followed by Attitudes with four and Products and Technology with three. The Acquired Brain Injury/Physical group of assessments had representation within two chapters only, Products and Technology (15) and Support and Relationships (six).

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Assessment Approach Utilized (Environment as a Barrier or Facilitator) The study also considered the structure of response options and whether they allowed for the direct measurement of the environment as a barrier or facilitator. Although a range of different response options were used across instruments and within instruments, some general observations could be made. The CHART, CAN, CANDID, DDP, ICAP, and the HoNOS family of assessments all had some provision for the environment to be assessed in terms of its impact on the individual. For example, item 11, response option 3 in the HoNOS65+ states, “Distressing multiple problems with accommodation; e.g., some basic necessities are absent (unsatisfactory or unreliable heating, lack of proper cooking facilities, inadequate sanitation); clear elements of risk to the patient resulting from aspects of the physical environment.” By contrast, the other instruments tended to focus on a person’s need for personal support and/or assistive devices rather than directly measuring the current impact of this aspect of the environment (e.g., SIS, PCI, SNAP, FIM, RUG-ADL, DRS, DD-SNAP, MPAI-4, BI, and CDER). For example, option 4 under Daily Living Supports of the DD-SNAP states, “Partial to complete assistance is needed in all areas of self-help, daily living, decision making, and complex skills.”

Discussion While it may not be the primary intention of the instruments reviewed in this study to assess the way in which environmental factors can inhibit or facilitate the functioning of people with disabilities, the rationale of the biopsychosocial model of disability and the ICF argues that these factors are crucial in understanding disability. The results of this study indicate that there is a major conceptual gap between the ICF and instruments that are widely used throughout the disability sector, in terms of how the two approach disability. No instrument reviewed in this study gave as much importance to environmental factors as the ICF and the biopsychosocial model of disability. In addition, several facets of the environment, as identified by the ICF, are ignored by almost all the instruments studied. The first, Natural Environment, is understandable given that the instruments were designed to be used in the developed world and the Natural Environment chapter of the ICF tends to assess features like physical geography and climate, which would impact more heavily upon individuals in the developing world. The second factor, Attitudes, is of more concern given that social attitudes have been demonstrated to be an important contributor to the experience of disability (Schneidert et al., 2003; WHO, 2001). The HoNOS family of instruments and the DDP (which were designed for people with psychiatric and intellectual disabilities respectively) were the only instruments that addressed the issue of attitudes in terms of their impact on the person. Relative coverage of environmental constructs varied considerably across instruments. Only one instrument, the DDP, demonstrated a relatively comprehensive yet economical account of environmental factors through its use of multiple qualifiers providing for explanatory complexity with respect to potential environmental barriers. The ICF framework was able to accommodate the majority of constructs identified within instruments. There were, however, two instruments that contained more detail than that provided by the ICF. The CHART, for example, assesses potential barriers to accessing

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transportation in several ways to capture the diverse number of potential obstacles that could occur. Similarly, DDSNAP makes the distinction between paid and unpaid support, which is an important consideration in terms of service planning. The differing focus on the environment between instruments representing different disability groups is possibly a reflection of the relative importance of different environmental factors for each of these groups (i.e., people with physical disabilities are likely to require assistive devices more than people with mental health issues). However, it would also seem reasonable that aspects of the environment not covered by these instruments such as services, systems, policies, and attitudes would also impact upon their experience of disability. The assessment approach employed by 11 of the instruments with respect to the environmental factors focused on a person’s need for personal assistance or assistive devices in a range of different areas. While this approach is useful for identifying what a person needs for independent living, it does not address whether certain environmental factors are a met need (facilitator) or an unmet need (barrier), and thus it does not provide the information required to determine a person’s current disability status in terms of the biopsychosocial model. Information concerning the existence of environmental facilitators and barriers is also needed to determine specific targets for interventions. The DDP makes a reasonable attempt to identify a range of barriers to a person’s functioning and independence, including lack of transportation, opinions and beliefs of family or guardian, service access and availability, and funding access. The identification of appropriate interventions for reducing the experience of disability requires that future instruments, or revisions to existing instruments, simultaneously assess a person’s needs and the range of environmental facilitators that are helping to meet some of those needs and the barriers that are operating to prevent other needs from being met. To the extent that the ICF framework provides a comprehensive analysis of environmental factors relevant to disability, future instruments will need to assess as many of its factors as are relevant to a particular type of disability or range of disabilities. However, to incorporate every ICF environmental factor would make an instrument extremely cumbersome to administer. One alternative would be to develop an instrument providing a comprehensive assessment of environmental factors relevant to people with disabilities, that could be used in conjunction with existing adaptive and/or support needs assessment instruments, such as those reviewed here. A second alternative would be to try to incorporate more critical aspects of the environment into these instruments. The challenge for the revision of existing instruments and/or the development of new instruments would be to preserve practicality in terms of length while finding effective and efficient ways of assessing the diverse range of environmental factors that have been identified as potentially contributing to the experience of disability. In this regard, the DDP’s innovative use of qualifiers concerning environmental facilitators or barriers might be considered as an example of how complexity can be captured without greatly compromising instrument length.

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