Background The supports paradigm has shifted focus from assessing competence and deficits among people with disabilities to identifying supports needed to live meaningful and productive lives in inclusive settings. Consequently, a rigorous and robust system is required that is capable of accurately determining the type and intensity of support needed and of allocating resources accordingly. The aim of the present study was to develop such a system to identify and classify support needs of people with disabilities based on the conceptual framework of the International Classification of ton, DC). Method A total of 1012 individuals with disabilities who were supported by accommodation and day programme organizations across the eastern states of Australia were assessed. The instrument was used in a team setting involving the person, their family and friends and staff as appropriate. Version 1 was administered with 595 people with disability. This version was refined according to qualitative and quantitative analyses. Another 342 individuals were assessed using Version 2, resulting in a combined data set for 936 individuals. Version 3 was then trialled with a further 76 individuals with disabilities. Results Ten domain scales in Health and Well Being (HWB) and Activities and Participation (A&P) were explored and refined. The scales effectively discriminated a range of intensities of support for people with various disabilities, with the highest support needs generally recorded by individuals with multiple disabilities who were ageing. The instrument can be used to develop a profile of needed supports across the domain scales. These measure current and predicted support needs, and contribute to future planning. The team approach proved beneficial in this regard. Conclusions The I-CAN is a useful instrument for effectively assessing the support needs of people with a disability using a person centred approach. It is effective in identifying support needs across health and well-being areas, and activities of daily living.
Active support training is an effective strategy for empowering staff to better support people with an intellectual disability to be meaningfully engaged in daily activities. There are implications for organisations related to ongoing implementation and practice improvement.
BackgroundYoung adults with Down syndrome experience increased rates of emotional and behavioural problems compared with the general population. Most adolescents with Down syndrome living in Western Australia participate in sheltered employment as their main day occupation. Relationship between day occupation and changes in behaviour has not been examined. Therefore, the aim of this research was to explore any relationship between post school day occupations and changes in the young person’s behaviour.MethodsThe Down syndrome Needs Opinion Wishes database was used for case ascertainment of young adults aged 15 to 32 years with Down syndrome. Families of 118 young people in this population-based database completed questionnaires in 2004, 2009 and 2011. The questionnaires addressed both young person characteristics such as age, gender, presence of impairments, behaviour, functioning in activities of daily living, and family characteristics such as income and family functioning. Post-school day occupations in which the young people were participating included open and sheltered employment, training and day recreation programs. Change in behaviour of young adults who remained in the same post-school day occupation from 2009 to 2011 (n = 103) were examined in a linear regression model adjusting for confounding variables including age, gender, prior functioning and behaviour in 2004 and family income.ResultsIn comparison to those young adults attending open employment from 2009 to 2011, those attending day recreation programs were reported to experience worsening in behaviour both in the unadjusted (effect size −0.14, 95% CI −0.24, −0.05) and adjusted models (effect size −0.15, 95% CI −0.29, −0.01).ConclusionsWe found that the behaviour of those participating in open employment improved compared to those attending other day occupations. Further examination of the direction of this association is required.
Background There is an urgent need for developing reliable, valid and practical instruments that assess and classify the support needed by persons with disability to function in their chosen living, working and social environments. I-CAN is an instrument that addresses the frequency and level of support needed (not individual skills or deficits) for each individual with a disability. Method Studies were conducted to assess the test-retest reliability and inter-rater reliability. Concurrent validity was investigated by exploring the relationship between the I-CAN domain scales and the Inventory for Client and Agency Planning (ICAP) (Bruininks et al. 1986) and the Quality of Life Questionnaire (QOL-Q) (Schalock & Keith 1993). Predictive validity studies were undertaken using day-and night-time support hours. Regression analyses were run using these measures with I-CAN domain scales. Two independent studies were also conducted to ascertain the practical utility of the instrument. ResultsThe I-CAN instrument demonstrated excellent inter-rater and test-retest reliability in the Activities and Participation domains. Low-to-moderate test-retest results in Physical Health, Mental Emotional Health and Behaviour domains were tracked to actual change in support needs in these areas. Validity proved acceptable. The relationships between I-CAN domain scales and adaptive behaviour were mixed but in the expected direction. Low-to-moderate correlation coefficients were evident between the I-CAN scales and the QOL-Q Total, but greater support needed in certain domains was associated with less empowerment and independence, and less community integration and social belonging. Attempts to explain current support hours against the I-CAN scales were disappointing and suggest that a number of other factors apart from individual support need to play a significant role. There was general satisfaction with the assessment process from stakeholders and participant groups. Conclusions I-CAN is a reliable, valid and user-friendly instrument for assessing the support needs of people with disabilities. It uses a process that involves the persons with disability, their family and friends and staff as appropriate. It is also apparent that the current provision of paid support hours by agencies is a complex phenomenon that is not based solely on individual support needs. Further research is warranted on the influence of the environment and the perceptions of need for support based on negotiable and non-negotiable support needs.
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