Conceptualizing Supports and the Support Needs of People With Intellectual Disability

This is the third in a series of perspective articles (Schalock et al., 2007; Wehmeyer et al., 2008) from the Terminology and Classification Committee of the American Association on Intellectual and Developmental Disabilities (AAIDD). The purpose of these articles is to share our thoughts on critical issues associated with terminology, definition, and classification in the field of intellectual disability and to seek input from the field as we prepare the 11th edition of AAIDD's Diagnosis, Classification, and System of Supports Manual (the working title). In the first article (Schalock et al., 2007), we explained the reasons for shifting from the term mental retardation to intellectual disability. Although the two terms cover the same population of individuals, we concluded that intellectual disability was the better term because itIn the second article (Wehmeyer et al., 2008), we distinguished between operational and constitutive definitions of intellectual disability and discussed their application to understanding the construct underlying the term intellectual disability. The primary function of an operational definition is to assure consistency among diagnosticians by setting parameters for observing and recording evidence of the disability (Wehmeyer et al., 2008). We supported the continued use of the operational definition of intellectual disability (formerly mental retardation) from the 2002 manual (Luckasson et al., p. 1): “[Intellectual disability is] characterized by significant limitations both in intellectual functioning and in adaptive behavior as expressed in conceptual, social, and practical adaptive skills. This disability originates before age 18.”The operational variables included in AAIDD definitions have not changed significantly in 50 years (Schalock et al., 2007). Operational criteria for diagnosis have been generally consistent for the past 35 years, when the IQ criterion was changed from one to two standard deviations (Grossman, 1973). However, the construct underlying the term intellectual disability (and, thus, the constitutive definition of intellectual disability) has changed significantly over the last 2 decades due to the impact of the social–ecological model of disability (Institute of Medicine, 1991; Luckasson et al., 1992, 2002; WHO, 2001). In this model, intellectual disability is understood as a multidimensional state of human functioning in relation to environmental demands.This article focuses on supports and support needs, as they pertain to persons with intellectual disability, and closely related developmental disabilities. Definitions of each are as follows:This article is organized into five sections: (a) distinguishing the concept of supports from the construct of support needs; (b) conceptualizing supports as the bridge between “what is” (i.e., a state of incongruence due to a mismatch between personal competency and environmental demands) and “what can be” (a life with meaningful activities and positive personal outcomes); (c) considering support needs within a model of human functioning; (d) recommending an assessment and planning process to guide planning teams (and organizations) when developing and implementing individualized support plans; and (e) comparing and contrasting support planning with other planning approaches in the field of intellectual disability and related developmental disabilities.Supports are resources and strategies that enhance human functioning (Luckasson et al., 2002). Although this definition was developed with people with intellectual disability in mind, it is clear that everyone uses supports. The 17th-century theologian John Donne wrote, “No man is an island” (as cited in Jokinen, 2006) to convey the fundamental truth that human beings do not thrive in isolation from others. We live in an interdependent world and everyone needs a variety of supports to function on a daily basis. However, the types and intensity of supports needed by people with intellectual disability are different from those needed by most other people.Support needs, as we use it and position it within our understanding of intellectual disability, is a psychological construct referring to the pattern and intensity of support a person requires to participate in activities associated with normative human functioning. Multiple psychological constructs have been identified regarding both “states” and “traits” of humans. For example, anxiety, intelligence, happiness, and morality are all psychological constructs on which there are extreme points (e.g., euphoric vs. depressed) as well as many points in between, just like the construct of support needs. The support needs construct is based on the premise that human functioning is influenced by the extent of congruence between individual capacity and the environments in which that individual is expected to function. Addressing this congruence (i.e., ensuring person–environment fit) involves understanding the multiple factors that shape human performance, determining the profile and intensity of needed supports for a particular person, and providing the supports necessary to enhance human functioning.The concept of need generally refers to a condition characterized by the absence of some requisite necessity. Within professional literature pertaining to health, the concept of need has traditionally referred to a condition characterized as “a disturbance in health and well-being” (Donabedian, 1973, p. 62). Within psychology, need is defined as “what is necessary for an organism's health and well being” (Harré & Lamb, 1988, p. 409) or a motivated state resulting from “a feeling of unfulfillment or deprivation in the biological system…evidenced by a drive to complete such a lack” (Colman, 2001, p. 631). As discussed by Thompson and colleagues (Thompson et al., 2002, 2004b), support needs are identified on the basis of input from the individual and other respondents. Global (i.e., overall) support needs can be understood in at least four distinct ways:We do not see a person's support needs as necessarily or exclusively reflecting a disturbance of human capacity (although disability certainly may result in a disturbance of human capacity); rather, the person's support needs reflect a limitation in human functioning as a result of either personal capacity or the context in which the person is functioning. Like other psychological constructs, the level of a person's support needs (like the level of a person's motivation or shyness) is inferred and not directly observable. Moreover, an individual's support needs can be measured with varying degrees of accuracy by self-report and other report indicators of the intensity of support needs, such as is accomplished using the Supports Intensity Scale (Thompson et al., 2004a). To be clear, we see the support needs construct as reflecting more of an enduring characteristic of the person than simply a point-in-time description of the need for a particular type of support. People with intellectual disability are people who require the provision of ongoing, extraordinary (when compared with their nondisabled peers) patterns of support. Providing supports to people with intellectual disability enables their functioning in typical life activities in mainstream settings but does not eliminate the possibility that they will continue to need ongoing supports. Put another way, if supports were removed, people with intellectual disability would not be able to function as successfully in typical activities and settings.A major implication of conceptualizing intellectual disability as a state of functioning instead of an inherent trait is that the person–environment mismatch is addressed. The focus is not solely on “fixing” the individual. This implication is shown in the supports model depicted in Figure 1. First, in this model, a mismatch between personal competency and environmental demands results in support needs that necessitate particular types and intensities of individualized supports. Second, to the extent that these individualized supports are based on thoughtful planning and application, it is more likely that they will lead to improved human functioning and personal outcomes. As a bridge between “what is” and “what can be,” the focus of educational and habilitation service systems shift to understanding people by their types and intensity of support needs instead of by their deficits. Although there is a reciprocal relationship between impairments and support needs in that greater personal limitations will almost always be associated with more intense support needs, a focus on reducing the mismatch between peoples' competencies and the environmental requirements where they function, rather than a focus on deficits, is more likely to reveal supports that enhance personal outcomes.Figure 1 also illustrates two related global functions of individualized supports. The first function addresses the discrepancy between what a person is not able to do in different settings and activities and what changes–additions make that person's participation possible (e.g., promote human functioning). The second function of individualized supports focuses on enhancing personal outcomes by improving human functioning. Both functions need to be thoughtfully aligned.Sometimes, planning teams focus solely on what individuals can and cannot do in a variety of settings and, thus, arrange supports to empower individuals to do more things. Although this type of planning may lead to an individual's improved functioning, that individual's personal outcomes may not be significantly enhanced. Such planning may expand the activities available to the person and may even increase participation by the individual, but if these activities are not based on the person's preferences and priorities, any improvement in personal outcomes may be negligible. Equally misguided would be a focus only on personal priorities and preferences without thoughtfully considering the gaps between a person's competence and his or her environmental demands. This approach to planning increases the risk that supports will be arbitrarily applied. For example, an individual may want to live in his or her own home in the community, but may need some support that peers without disabilities will not need due to specific safety related concerns. A “throw in everything plus the kitchen sink” approach to supporting the individual might involve supplying staff inside the home 24 hr a day, 7 days a week who do all the cooking, cleaning, transporting, and so forth. Such excessive support provisions will not enhance the life experiences of the individual and will certainly result in wasting finite resources. Therefore, it is important to thoughtfully analyze and align both personal priorities and areas of need when planning and delivering supports.Supports are resources and strategies that enhance human functioning (Luckasson et al., 2002). Human functioning is enhanced when the person–environmental mismatch is reduced and personal outcomes are improved. Because human functioning is multidimensional, considering supports as a means to improve human functioning provides a structure for thinking about more specific functions of support provision.Human performance technology (HPT) theorists posit that human functioning results from interactions between a person's behavior and his or her environment (Gilbert, 1978). For example, Wile (1996), who created an HPT model by synthesizing five other leading HPT models, suggested that human performance is influenced by the following seven elements: organizational systems, incentives, cognitive supports, tools, physical environment, skills–knowledge, and inherent ability. Examples of support that correspond to each of Wile's human performance elements are listed in Table 1. Wile noted that some of these elements are external to the person (Elements 1–5), whereas others (Elements 6–7) are internal.Wile's (1996) seven elements are interdependent in terms of human performance and, more accurately, should be thought of as being cumulative. Therefore, from a supports perspective, solving a problem for any single element may be of limited value if problems with the other elements are ignored. As Edyburn (2000) pointed out when relating Wile's model to decision making in the area of assistive technology, getting a tool (Element 4) to improve performance would have a negligible impact if the person lacked motivation (Element 2) to be productive on the task for which the tool was to be used. Based on Wile's HTP model, supports should not be delivered to address discrete life activities or separate events, or be based on specific support individuals (e.g., job coaches, teachers). Rather, systems of support should be conceptualized where multiple aspects of human performance are considered in regard to multiple settings.It is not difficult to envision what a system of support would entail when considering the human performance elements in Table 1. Take the case of a man with intellectual disability working on a community job. The man in our hypothetical example was hired through an on-the-job-training (OJT) program offered by a state vocational rehabilitation (VR) agency (Element 1: Organizational Systems). This person was motivated to do well on the job because of opportunities for and (Element but from on specific job that to be difficult (Element In this assistive to more (Element and needed to have the physical environment to complete job (Element task of aspects of the job were developed and to (Element and was to a job that was consistent with his and personal This example illustrates each element of human performance was through a system of supports, the a to be on his implication of Wile's (1996) model is the supports at the organizational Although is not considered an individualized it is that and can have on the and of the Disabilities of and on opportunities to with disabilities in the to it was in many to a with needs to a Although and state as well as would be listed as distinct supports on individualized it is important to the that and have on the and of supports that are are a of resources and strategies that enhance human functioning. individual will need all of the types of supports that are support needs both and teams are in the position to the types of supports that people As shown in Figure we a process for (a) what the person most and needs to (b) the of support a person will require to what or most and needs to (c) developing an to and supports, (d) and the and (e) personal outcomes. This support planning and process has from a planning process by Thompson et first of this support process requires the use of planning A of is the focus is on the individual's personal and The primary purpose of a process is to out what is important to a person, and it is that are not by available or by such as or limitations in a person's & 2002). As a has been shown to better outcomes for with intellectual disability than do of service planning & et al., involve the person with the disability and people important to that The of is a of a person's life This into those aspects of the individual's life that are (i.e., aspects to and elements that will enhance his or her life in the (i.e., aspects to second of the support process involves the person's support needs. As one example, the Supports Intensity Scale (Thompson et al., is a to an individual's support needs seven life as well as to and support needs. However, any that a planning to support needs be of the person in variety of life activities and with the person and his or her The critical to is the of the extraordinary support that a person would require to successfully in an of those associated with the life priorities identified through support needs assessment and adaptive behavior assessment are both with typical performance in the two can be is important to that a person's support needs is not the same as his or her personal adaptive behavior the adaptive that a person has (and, thus, or performance associated with personal support needs assessment an individual's extraordinary supports needed to participate in the activities of daily life (Thompson et al., As discussed by and of the Association of of Developmental Disabilities support needs assessment to be most should have the following (a) be into and by and with a of (b) consistent results and outcomes when service areas and (c) be person (d) and to a of (e) the support needs of people with and results that are to decision making a of and be to in the support planning process the of individuals their and and third of the process on the first two to an individualized support the from the to and it is important that an and of be and Because a cannot address all priorities at one some personal priorities identified in 1 may need to be and some difficult may need to be However, the result of should be individualized that (a) the settings for and activities in which a person is likely to a typical and (b) the types and intensity of support that will be (and by (Thompson et al., p. of the requires that planning teams the outcomes of the teams should a closely the extent to which the person's individual was should be ongoing and in terms of to the congruence between what was and what has to is on the extent to which life and personal outcomes are being This involves the individual's life experiences through the of personal outcomes. is important to that personal preferences and priorities can over and this of the process will assure that the when they continue to the person's needs. In on personal outcomes can and state systems with regarding the extent to which systems are the needs of the field of intellectual disability, there are a of that can be individuals, and these are based on the assessment of and using both self-report and & 2007). Table 2 and indicators that can an at the level of the individual through the use of at the or systems level about the and use of and indicators are in the listed in the and in et should be noted there are a variety of terms systems for the listed in Table the among the systems are when considering that these were developed by different at different and for different For example, and in the to the on and in the as well as to the and in the as by the Human and the Association of of Developmental Disabilities this process requires a significant of and a planning process is to supports that are with individual needs and outcomes of people with intellectual disabilities. teams can always to in the process when needed (e.g., if the was not due to the planning would want to to and the In the of should be as individuals and and require support The process always with personal and needs for to planning and is by of and with an of planning terms and as in an individualized support individualized service individualized program individualized individualized individualized rehabilitation individualized habilitation and individualized service The or in between and may significant (e.g., age approach to for all practical planning others are by whereas others are of past and that have over Although what a planning should is well the of this it is to between different approaches to planning and the need to support planning as a of any individualized considering different approaches to we that planning teams use only one to the of an individual's Multiple planning the risk of being as well as it would be for different that are an individual in different to use a planning However, within an it would be to use a single that for multiple planning We that a variety of planning approaches can be on individual and supports are resources and strategies that enhance individual functioning (Luckasson et al., we as organized means for delivering supports, or other of (e.g., For example, a means for people to a variety of supports, and such supports from to planning an individual's that intellectual and provides opportunities to skills. to health problems as well as such as or physical all will the same or of supports. between service might be due to different and or be result of different of on our definition of service planning should focus on the types of that need to be as well as the of that a person should have with a service (e.g., many of service a person might need in a Because are to supports and other of it is important for to have systems of A service planning in an individualized is necessary to service who can the supports or other types of that is service planning is not a for support of service or in which an individual is to participate is to result in individualized supports or personal outcomes. in our distinguishing between support planning and service planning is not just an of teams need to an individual needs to but this is not the same as planning the patterns and intensities of supports a person needs to function in activities and settings consistent with his or her also from are in and planning where the focus is on and skills. Because the purpose of and vocational rehabilitation (VR) is to people in a positive way, and of However, support might involve educational settings for of the focus of support planning in such a case would be on participation support are not characterized by and that for an individual. Rather, the function of support is to the resources and strategies that will bridge the between the that a person with intellectual disability experiences in life activities (i.e., person–environment and the life experiences and opportunities (i.e., that the individual the case of who are teams are to in (e.g., as well as for However, planning and should also support For example, planning for the types of that will be to support a to the and an in the least environment would be to the of with intellectual disabilities. is important to that we are not that support planning should the focus of all individualized However, we are that the need for support planning should not be in where planning are the AAIDD the American Association on Terminology and Classification Committee the concept of supports in the manual (Luckasson et al., the that supports were an but In that the focus was on support resources other technology, and support functions (e.g., and and community and support intensity of a supports intensity assessment and outcomes. A was between and supports. This to which at that to be to from individualized supports, which are based on the needs of the individual. a of support were offered on the basis of two (a) supports in and (b) support activities are by individuals or in that AAIDD manual (Luckasson et al., a better understanding of the for support provision and the need to supports in the context of an individualized process that and This understanding due to in the field between the and 2002 among these were (a) a greater of the value of as well as of which personal and and (b) an approach to disability that the of person–environmental interactions and the of human functioning through the use of individualized (c) a on personal well of and personal and (d) an of support in assistive we approach the and of the 11th edition of the there is that we can from past as well as In this we distinguished supports from support needs and discussed on individual support needs can be through understanding of human In we a supports model that illustrates supports are a bridge between what is and what can be through the of the mismatch among a person's the demands of environment, and the of personal outcomes. We also a process for and individualized supports 2) and suggested that support planning can other approaches to planning and in an individualized planning