Stepping out: information for families of young people with a disability moving from secondary school to adult life

Leaving secondary school means making the change from being a school student to becoming a young adult. It is a critical time and can have a significant impact on the lives of the young person and family members. This transition period involves many changes which can be both challenging and rewarding. It is a time of moving towards independence and may not always be an easy or smooth process. Choices about further study, training for work and moving out of home all need to be considered

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

A study of caregiver support services: perspectives of family caregivers of persons with intellectual disabilities in Singapore

Most people with intellectual disabilities in Singapore live with family and are supported by family caregivers. Many caregivers lack the awareness, skills and resources needed for their caregiving role. A caregiver support service designed to build the capability of family caregivers serving children and adults with intellectual disabilities was evaluated after 2 years of operation to ascertain the level of caregiver coping and resilience, perceived impact of strategies for emotional support, and satisfaction with a range of support services and gaps in service. Family caregivers were surveyed regarding satisfaction with services received using the Client Satisfaction Questionnaire (CSQ-8) and feedback from activities and events. Their coping and resilience were measured with the Coping Competence Questionnaire (CCQ). Qualitative data from caregiver interviews and staff focus groups were analysed for key themes that were triangulated and converged with other findings. Satisfaction, better coping and resilience were associated with specific support services. Key themes emerged around several effective supports and areas of unmet needs across the lifespan. Limitations and areas for improvement were identified to meet a broader range of caregivers. Targeted family support services can enhance the well-being of caregivers supporting people with intellectual disabilities (ID) across the lifespan. The results inform policymakers and support agencies that support of the family, not just the person with ID, is an important factor and needs to be incorporated at the heart of the design and development of any inclusive community living in Singapore

Making the move: information for families of children with a disability making the move from primary to secondary school

Making the move provides information to help families support their son or daughter with a disability in making the move from primary school to secondary school. The information has been developed from: research findings, focus group meetings held across NSW, input from parents and service providers to a website forum, advice from a Project Advisory Group established by Ageing, Disability and Home Care, Department of Human Services NSW (ADHC). This resource is not intended to be exhaustive. Children and young people with a disability and their families are diverse and have wide ranging needs, interests and talents. For this reason the booklet gives general information only. Readers are encouraged to use the links and contacts to seek more specific information that will be relevant to their own needs and interests. Contacts, including phone numbers and websites, are located in the Useful contacts section at the end of this booklet

Day occupation is associated with psychopathology for adolescents and young adults with Down syndrome

Background: Young 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. Methods: The 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.Results: In 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). Conclusions: We 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

Evaluating a transition model for people with intellectual disability and complex behaviour : what works and what doesn’t

A pilot program was established by Disability Services, Queensland, Australia, in partnership with community sector agencies, to provide short term accommodation and assessment to people with an intellectual disability who have complex and harmful behaviours. The paper will report individual client outcomes, staffing, cross agency collaboration issues, and the impact on families and other stakeholders

Complex support needs profile of an adult cohort with intellectual disability transitioning from state-based service provision to NDIS-funded residential support

Background: People with intellectual disability and chronic and complex support needs often require unique models of care that are intensive and expensive. How these supports can be continued within a rapidly changing policy and funding context in Australia, has not been fully determined. Method: This descriptive study utilised a retrospective electronic case-file audit design. Demographic details, chronic health conditions, medications, behaviours of concern, and overall support needs profile were mapped for 41 participants. Results: The profile is one of an ageing cohort, with high levels of chronicity and polypharmacy that requires a specialised workforce to fully meet their support needs. Conclusion: As the people with ID in this cohort age, the training needs of the current and future workforce will need to adapt as different issues become more prominent. How the national disability health and policy settings can best accommodate these support needs remains unclear

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)

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

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