The I-CAN : using e-Health to get people the support they need

Background: The I-CAN is a comprehensive, reliable and valid system of identifying and classifying support needs of people with disabilities based on the conceptual framework of the International Classification of Functioning, Disability and Health (ICF) [1] and the American Association on Intellectual and Developmental Disability (AAIDD) supports concept [2,3]. Originally developed for people with Developmental Disability, the I-CAN's application of internet technologies is currently being trialled in Mental Health, Rehabilitation Medicine and other disciplines. Conceptual underpinnings, research and implementation to date are summarized. Method: ICF based domains covering Health & Well Being and Activities & Participation have been refined over several versions. A total of 1012 individuals with disabilities across the eastern states of Australia were assessed using the first three versions, and 193 with the fourth versions. Studies investigated reliability, concurrent and predictive validity and user satisfaction. A fourth internet-based version has been implemented and is under continuing investigation and refinement. Results: The I-CAN instrument demonstrated good reliability and validity in studies to date. Domain scales effectively discriminated a range of intensities of support for people with various disabilities, with highest support needs generally recorded by individuals with multiple disabilities and ageing issues. Correlations between I-CAN and adaptive behaviour scales were mixed. The ICAN scales measure individual support needs. However, regression analysis suggests that staffing and other organizational factors play a significant role in resource allocation apart from individual support need. There was general satisfaction with the assessment process from stakeholders and participants groups. Several brief case examples shall be presented. Conclusions: The I-CAN provides a reliable and valid tool for assessing and reporting on the support needs of people with disabilities using a process that involves the person, their family, friends and staff as appropriate. Several possibilities exist for this unique tool and the application of the ICF framework to e-health

The supports paradigm

In this chapter we will briefly describe the supports paradigm and examine a variety of examples of how supports have been operationalized. Specifically, we will analyse (a) what is the supports paradigm, (b) conceptualization of support needs, (c) support-needs assessment, (d) resource allocation, (e) active support, (f) support, function, and outcomes, and (g) culture and support. As appropriate, these analyses will focus on the individual level (microsystem), the organization level (mesosystem), and the level of service systems and society (macrosystem)

Intelligence is as intelligence does : can additional support needs replace disability?

In many developed cultures there is an assumption that IQ is intelligence. However, emerging theories of multiple intelligences, of emotional intelligence, as well as the application of IQ testing to other cultural groups, and to people with disability, raises many questions as to what IQ actually measures. Despite recent research that shows IQ testing produces a floor effect when applied to people with lower IQ, as well as research that shows the Flynn effect also applies to people with lower IQ, in practice IQ scores below a certain cut-off are still being used to determine and classify a person's intellectual disability. However, a new paradigm is emerging, almost returning to the original intent of Binet, where measurement is made of the supports the person needs. In this paper, we argue that if one extends the notions of this supports paradigm that diagnosis of intellectual or physical disability could potentially be replaced by diagnosis of additional intellectual support needs, or additional physical support needs

I-CAN : the classification and prediction of support needs

Background: Since 1992, the diagnosis and classification of intellectual disability has been dependent upon three constructs: intelligence, adaptive behaviour and support needs (Luckasson et al. 1992. Mental Retardation: Definition, Classification and Systems of Support. American Association on Intellectual and Developmental Disability, Washington, DC). While the methods and instruments to measure intelligence and adaptive behaviour are well established and generally accepted, the measurement and classification of support needs is still in its infancy. This article explores the measurement and classification of support needs. Method: A study is presented comparing scores on the ICF (WHO, 2001) based I-CAN v4.2 support needs assessment and planning tool with expert clinical judgment using a proposed classification of support needs. A logical classification algorithm was developed and validated on a separate sample. Results: Good internal consistency (range 0.73-0.91, N = 186) and criterion validity (κ = 0.94, n = 49) were found. Conclusions: Further advances in our understanding and measurement of support needs could change the way we assess, describe and classify disability

Does a measure of support needs predict funding need better than a measure of adaptive and maladaptive behavior?

Internationally, various approaches are used for the allocation of individualized funding. When using a databased approach, a key question is the predictive validity of adaptive behavior versus support needs assessment. This article reports on a subset of data from a larger project that allowed for a comparison of support needs and adaptive behavior assessments when predicting person-centered funding allocation. The first phase of the project involved a trial of the Inventory for Client and Agency Planning (ICAP) adaptive behavior and Instrument for the Classification and Assessment of Support Needs (I-CAN)-Brief Research version support needs assessments. Participants were in receipt of an individual support package allocated using a person-centered planning process, and were stable in their support arrangements. Regression analysis showed that the most useful items in predicting funding allocation came from the I-CAN-Brief Research. No additional variance could be explained by adding the ICAP, or using the ICAP alone. A further unique approach of including only items from the I-CAN-Brief Research marked as funded supports showed high predictive validity. It appears support need is more effective at determining resource need than adaptive behavior

[In Press] Experiences of support following autism diagnosis in adulthood

This study aimed to explore experiences of support after adulthood autism diagnosis. In this mixed-methods survey study of 137 adults, we found that most common formal supports received were counselling and mental health. Common unmet support needs were sensory sensitivities and accessing other services. Cost, lack of information, and fear of not being taken seriously were common barriers. Informal support was mainly helpful for self-understanding and emotions toward diagnosis. Qualitative findings included difficulties accessing formal support, need for practical quality-of-life supports and support from autistic peers and online communities. Based on these findings, future development of supportive interventions should address unmet needs, improve access, and explore the integration of autistic peer support and online support into formal services

[In Press] A qualitative study of adults' and support persons' experiences of support after autism diagnosis

Adulthood autism diagnosis has become increasingly common, but little is known about post-diagnosis support experiences and needs. We interviewed 19 autistic adults and 4 support persons on experiences of formal and informal post-diagnosis support. Reflexive thematic analysis was used to identify themes. Participants reported difficulties accessing suitable formal support, especially regarding education and employment. Informal support was helpful but created challenges in the relationships between autistic adults and support persons. For autistic adults, support from autistic peers fostered belonging and self-acceptance. We also identified complex interactions between adults’ post-diagnosis identity development and support experiences as they resolved the dilemma between self-acceptance and a desire to change. Findings have important implications for services working with autistic adults and their families

Choose your own adventure : pathways to adulthood autism diagnosis in Australia

Pathways to diagnosis in adulthood are poorly understood. Even less is known about undiagnosed adults who believe they may be autistic. This mixed-methods online survey examined adults’ journeys from initial concern to receiving the diagnosis. Quantitative findings showed the diagnostic process to be highly heterogeneous. Qualitative analysis identified desires for explanation and support as motives for seeking diagnosis. Cost and fear of not being taken seriously were major barriers, echoed by qualitative responses that described the process as confusing, expensive and time-consuming. While most participants were satisfied with the diagnosis, their emotional reactions were complex. Findings support the need for thoroughly implementing national guidelines, and for improved knowledge and communication in mainstream clinicians encountering clients with possible autism characteristics

Understanding anxiety in adults on the autism spectrum : an investigation of its relationship with intolerance of uncertainty, sensory sensitivities and repetitive behaviours

Anxiety is present in high rates in both children and adults on the autism spectrum. An increasing number of studies have highlighted the potentially important role that intolerance of uncertainty may have in anxiety for those on the spectrum, as well as their interrelationships with sensory sensitivities and repetitive behaviours. In response to a lack of studies involving adults, this study examined self-report survey data regarding intolerance of uncertainty, sensory sensitivities, repetitive behaviours and anxiety in a sample of 176 adults on the autism spectrum (mean age = 42). Intolerance of uncertainty and anxiety were both found to be elevated relative to non-autistic adults (N = 116) and significant, positive correlations were found between intolerance of uncertainty, anxiety, repetitive behaviours and sensory sensitivities in those on the spectrum. Intolerance of uncertainty was found to be a significant mediator between sensory sensitivities and anxiety, as well as between anxiety and insistence on sameness behaviours. These results were not sensitive to age. Intolerance of uncertainty is an important factor to be considered in the conceptualisation and management of elevated rates of anxiety for adults on the autism spectrum

Autism in later life : what is known and what is needed?

Purpose of Review: Autism is a lifelong neurodevelopmental condition characterised by differences in social interaction and communication across multiple contexts, as well as restricted, repetitive patterns of behaviour or interests. As all adults age, they face an appreciable decline in health and functioning. For autistic adults, the challenges are twofold: they may face autism-specific effects of ageing as well as other non-specific, age-related effects experienced by the general population. This report summarises the available literature regarding older autistic adults over the age of 50, from 2010 to mid-2019. Recent Findings: Emerging evidence suggests that older autistic adults experience complex physical and mental health comorbidities. Studies that have included older adults report challenges such as underemployment, a lack of appropriate healthcare, and concerns for caring relationships as the adult ages. However, these studies have tended to be skewed towards younger and middle-aged adults. Summary: Overall, there is a notable lack of studies that focus on older autistic adults and on ageing-relevant topics, with a particular absence of the autistic voice in the research. Resultantly, there remains a gap in our knowledge regarding the specific circumstances and needs of autistic adults in older age. In moving forward, it will be important to fill this gap with inclusive research to guide the most relevant and effective work that improves outcomes for this population