In: Journal of policy and practice in intellectual disabilities: official journal of the International Association for the Scientific Study of Intellectual Disabilities, Band 15, Heft 3, S. 267-268
AbstractBackgroundDespite various government initiatives, people with disabilities all over the world face some degree of hindrance when they try to contribute to society.AimThis project sought to give voice to and understand the perceptions and experiences of persons with disabilities in Singapore when contributing to society through volunteerism and employment and to explore solutions to help access and retain employment and volunteering.Method and ProcedureThis small qualitative study recruited three convenience samples of people with disabilities aged 18–49 years old who met criteria for daily activity over the previous 12 months. Participant recruitment was limited due to the Covid pandemic lockdown. Ten individuals had maintained open employment, six had worked as a volunteer and four were neither working nor volunteering. All 20 participants were briefed online on the use of the photovoice technique. Interviews were then conducted online, beginning with a 5‐min demographic survey. Approximately hour long semi‐structured interviews followed. Eleven participants used photovoice but nine who were working or volunteering did not as they were unable to take photos in their workplace. Several individuals were supported during the interview by a caregiver or staff member for example a job coach.FindingsThemes were identified within the four central areas of enquiry: (i) self‐perceptions of being a beneficiary or contributor to society; (ii) the benefits to working and volunteering; (iii) enablers and barriers to working and volunteering and (iv) solutions to access and retain employment and volunteering. Several barriers to use of photovoice were encountered. The importance of inclusive and conducive environments was recognised along with the roles of all stakeholders across the ecosystem.ConclusionEmployment and volunteering can significantly impact quality of life for persons with disabilities and their families and benefit the society. Collaboration among all stakeholders is required to better address solutions and improve desired employment and volunteer outcomes.
In: Journal of policy and practice in intellectual disabilities: official journal of the International Association for the Scientific Study of Intellectual Disabilities, Band 20, Heft 1, S. 117-131
AbstractMost 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.
BackgroundSince 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.MethodA 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.ResultsGood internal consistency (range 0.73–0.91, N = 186) and criterion validity (κ = 0.94, n = 49) were found.ConclusionsFurther advances in our understanding and measurement of support needs could change the way we assess, describe and classify disability.
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 Functioning, Disability and Health (ICF) [WHO, The International Classification of Functioning, Disability and Health (ICF), Author, Geneva, 2001], and the supports concept [Mental Retardation: Definition, Classification and Systems of Support, 9th edn (1992), 10th edn (2002), American Association on Mental Retardation, Washington, 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.
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.Results The 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.