The Measurement and Conceptualisation of Support Needs

Abstract

We all need support. This thesis with publications provides evidence that this support, and its multiple divisions, can be measured and has potential for guiding the fair allocation of individual disability funding. Further, a current conceptualisation of support and support needs is critiqued and a new conceptualisation proposed. With a focus on the extraordinary support needs of people with disability, initial evidence for the potential of these new conceptualisations is gathered. This thesis had two aims; 1. Contextualise, critique and further develop the conceptualisation of the support needs construct and supports paradigm, and explore areas of future application. 2. Demonstrate that support needs can be directly measured, and applied to systems of classification and resource allocation. The support needs construct as a key component of understanding disability was first introduced by the American Association of Intellectual and Developmental Disability (AAIDD) in 1992 (Luckasson et al., 1992). The AAIDD also developed the Supports Intensity Scale (SIS; Thompson et al., 2004) to directly measure support needs of adults with intellectual disability. In parallel to the AAIDD, since 1998, the Centre for Disability Studies, University of Sydney has been developing the Instrument for the Classification and Assessment of Support Needs (I-CAN; Arnold & Riches, 2013), though with a somewhat different approach and underlying conceptualisation. The I-CAN was used as the basis for measuring support needs in this thesis. My critique of the conceptualisations described by AAIDD is focused on three areas; 1. That supports are merely “resources and strategies that promote the … well-being of a person and that enhance individual functioning” (Luckasson et al., 2002, p. 151) 2. That support needs represents “an enduring characteristic of the person” (Thompson et al., 2009, p. 137) 3. That support needs should be measured in reference to “normative human functioning” (Thompson et al., 2009, p. 135) within a hypothetical standardized environment. Firstly, I argue that supports do not simply “enhance individual functioning”, instead that supports are integral to human functioning and indeed that we interact with our environment through supports. I introduce the concept of a support boundary. I argue that supports should be defined as; Supports are people, resources, tools, equipment, education or strategies that enable a person to interact with their environment and pursue a valued life. Secondly, I propose that support needs are not a stable “enduring characteristic of the person”. Rather, support needs are dependent on the person’s health, life pursuits and environments - if health, goals or the environment change, then the person’s support needs change. I explore the intersection of support need and want, and propose a new definition of support needs as; a psychometric construct referring to the frequencies, types and overall amounts of supports that are reasonable or necessary for a person to pursue a chosen valued life. Thirdly, supports needed are those supports that a person uses in their environment and chosen valued life pursuits. I argue that it is an abstraction of actual supports needed to attempt to measure support need in reference to normative human functioning or a hypothetical standardized environment. Not all people want or can achieve a normative level of human functioning, regardless of what supports are in place. More important is a focus on the actual supports needed and wanted to pursue a valued life in the environments where the person lives - these are the supports that should be measured. These new conceptualisations are embodied in the I-CAN tool and the way it measures support need. The research findings reported in this thesis using the I-CAN are in part an evaluation of the feasibility, psychometric rigour, and applied utility of using a support-needs assessment based on these concepts. Initial evidence for these new conceptualisations is provided in a critical literature review of the development of support needs assessment tools, followed by three peer-reviewed journal articles. In one article (Chapter 5) I describe the history of the I-CAN tool and its current application and as well as its potential future application to e-health, with the most recent versions of the I-CAN being web-based assessments. In the next article (Chapter 6) I propose a new classification of support needs. I report good criterion validity of the I-CAN v4.2 classification algorithm compared with clinical judgment, including verification with an independent sample. This study also provides initial evidence for the potential of scoring support needs assessments based on the highest item in a domain as opposed to total domain scores. In the final peer-reviewed article (Chapter 7) I demonstrate that the I-CAN can more accurately predict person-centred individual funding allocation than adaptive behaviour assessment. I also demonstrate the multi-divisional nature of support needs by utilising a “funded-item approach”, that is, only those assessment items where the person needs funded formal supports are included in the scoring algorithm when predicting individual funding. Finally, I demonstrate the generally robust psychometric properties of a research version of the I-CAN. Interestingly, both studies in Chapter 6 and 7 included people with differing disability types. Whereas the SIS is designed to be used only for people with intellectual disability, the I-CAN is designed for use across disability type. Future research should explore potential application of the I-CAN and support needs assessment in other contexts, such as for people who are aging or even specific job roles support needs. My empirical findings demonstrate that the I-CAN is a generally psychometrically robust tool and this ecologically valid approach to support needs can be measured reliably. I demonstrated innovation in the approaches to the measurement of support need by examining the multi-divisional nature of support needs (such as the funded-item approach), and by evaluating the potential for scoring support needs based on highest items. In my final discussion I explore the potential future applications of support needs research opened by these new conceptualisations, including outcomes measurement and person-centred planning. I respond to the ongoing critical issues identified in the literature regarding the development of the support needs construct that my work has raised. Finally, I introduce a People-Support-Environment model, attempting to move the supports paradigm beyond an individual focus. Following the suggestion of Bradshaw (1994), I conclude with a challenge that our future discourse should explore terminologies such as equitable support needs and the distribution of opportunity.