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An assessment of policies guiding school emergency disaster management for students with disabilities in Australia
- Authors:
- BOON Helen Joanna, et al
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 9(1), March 2012, pp.17-26.
- Publisher:
- Wiley
Weather-related disasters in Australia may increase in frequency and severity as a result of predicted climate variability. However, there is a lack of literature regarding school emergency response planning for vulnerable students with disabilities. This study explored the literature in place, with a view to making future recommendations for disaster management. The study's results indicate that disaster preparedness is under-resourced and insufficient consideration has been given to the emergency preparedness planning and management with respect to meeting needs of vulnerable students with disabilities. Although the particular needs of vulnerable students with disabilities are briefly noted in the various state governments' education policies, they have not been systematically considered in the context of overall disaster planning for Australian schools. The authors concluded that education authorities review current emergency management policies in a consultative manner as to minimise risk for students with disabilities in natural disaster emergencies.
Opportunity to participate in planning and evaluation of support for children with disabilities: parents’ and professionals’ perspectives
- Authors:
- NOWAK Herawati I., BROBERG Malin, STARKE Mikaela
- Journal article citation:
- Journal of Intellectual Disabilities, 24(1), 2020, pp.5-20.
- Publisher:
- Sage
- Place of publication:
- London
A random sample of parents of children with disabilities (n = 144) from three Swedish municipalities participated in a structured telephone interview including seven questions on child participation and 156 professionals from the same municipalities completed a web-based survey including six questions on child participation. The aim of the study was to explore parents’ and professionals’ (1) ratings of the opportunities available to children with disabilities to participate in planning, decision-making and evaluation of support and (2) satisfaction with the children’s current level of such participation. The results indicated that opportunities for children with disability to participate directly in decision-making processes were limited. Parents and professionals rated older children’s opportunities to participate as better compared to younger. Most professionals relied more on parents’ descriptions of the child’s needs and opinions of support services than on direct communication with the child. (Publisher abstract)
Caregiving roles of siblings of adults with intellectual and developmental disabilities: a systematic review
- Authors:
- LEE Chung eun, BURKE Meghan M.
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 15(3), 2018, pp.237-246.
- Publisher:
- Wiley
As individuals with intellectual and developmental disabilities (I/DD) grow older, many siblings anticipate becoming caregivers for their brothers and sisters with I/DD. However, there is little extant research about the caregiving roles of siblings. The purpose of this review was to extend the literature by conducting a systematic literature review about sibling caregiving. To better understand this population, a systematic literature review was conducted about adult siblings of individuals with I/DD to examine the definition of caregiving, sibling caregiving experiences, and correlates of sibling caregiving. In total, 29 relevant studies were identified. Results indicate that there is no consistent definition of sibling caregiving. Further, adult sibling caregivers reported caregiving benefits and challenges. The literature is also mixed with respect to the correlates of sibling caregiving. It is necessary to conduct additional research to understand sibling caregiving for individuals with I/DD. Implications for future research, policy, and practice are discussed. (Edited publisher abstract)
‘How long are we able to go on?’ Issues faced by older family caregivers of adults with disabilities
- Authors:
- DILLENBURGER Karola, MCKERR Lyn
- Journal article citation:
- British Journal of Learning Disabilities, 39(1), March 2011, pp.29-38.
- Publisher:
- Wiley
As the population ages, the number of older carers of disabled children rises accordingly. This paper reports findings from a study of parents/carers of disabled children asking them about relationships, social support and future planning. These carers are often under a lot of stress because of failing health, financial pressures, bereavement and worry about the future of their sons/daughters. Participants included 29 older parents/cares of 27 adults with intellectual and/or developmental disabilities. They were interviewed to investigate their views and experiences regarding long-term care and service arrangements, health and psychological needs and future planning. Results revealed a serious lack of support, respite care and future planning which caused high stress levels for caregivers. The authors concluded that policy makers and researchers working in this should take into consideration the needs of older caregivers when making future plans for adults with disabilities.
Parental caregivers' desires for lifetime assistance planning for future supports for their children with intellectual and developmental disabilities
- Authors:
- HEWITT Amy, et al
- Journal article citation:
- Journal of Family Social Work, 13(5), October 2010, pp.420-434.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia, USA
This article introduces a new model of future planning designed for parents of children with intellectual and developmental disabilities (IDD) called Lifetime Assistance and presents findings from a study examining the future planning needs of parents of children with IDD and their willingness to pay for a service such as Lifetime Assistance. The Lifetime Assistance model combines planning for financial and personal well-being with the use of a paid, designated lifetime assistant called a Quality-of-Life Specialist. These specialists help families of people with IDD plan for the future as well as monitor the quality of life and well-being of an individual when their family members are no longer able to provide care and, as such, become substitute advocates. Using surveys informed by four focus groups, data were gathered from 244 parents, mainly mothers, in a Midwestern US state regarding the potential program. The family member was usually younger than 21, with moderate mental retardation or other developmental disabilities. Respondents generally reported low levels of satisfaction with the current system of support. Although almost all families had identified a person to support their family members when they were no longer able to do so, a great majority of parental caregivers identified the need for the Lifetime Assistance program and many were willing to pay for this service themselves. Implications of the findings for practice are discussed.