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Applying the CRPD to people with intellectual and developmental disability with behaviors of concern during COVID-19
- Authors:
- NANKERVIS Karen, CHAN Jeffrey
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 18(3), 2021, pp.197-202.
- Publisher:
- Wiley
People with intellectual and developmental disability (IDD) are a vulnerable population in all aspects of access and participation, abuse and neglect, and being subject to the use of restrictive practices. Accordingly, they are a group whose human rights can be impacted where equal access to supports, services, and accessible information is compromised. The current COVID-19 pandemic is a global humanitarian emergency that has had a devastating impact across the world, for all people. Growing concern has been raised about the impact of the COVID-19 virus on the health of people with disabilities and there has been subsequent development of strategies and protocols to promote equal access to information, health supports, and services. People with IDD have high levels of underlying comorbidity that increases their risk of contracting COVID-19 and measures to protect them from infection are critically important. However, those measures may trigger behaviors of concern and increase the risk of being subjected to restrictive practices. While some attention has been paid to the health impacts of COVID-19 on people with disabilities, there has been less paid to the impact on the human rights of people with IDD who present with behaviors of concern. The aim of this paper is to provide a hypothetical exploration of the impacts of pandemic prevention measures on people with IDD and behaviors of concern in the context of the Convention on the Rights of Persons with Disabilities (CRPD). In the absence of available guidance for working with people with IDD with behaviors of concern during COVID-19, we suggest behavior support response plans that aim to ensure that people with IDD with behaviors of concern are supported properly in a time of significant disruption for them, thereby safeguarding their human rights. (Edited publisher abstract)
Rethinking respite policy for people with intellectual and developmental disabilities
- Authors:
- CHAN Jeffrey, et al
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 9(2), June 2012, pp.120-126.
- Publisher:
- Wiley
Respite care has consistently shown benefits for service users and their families. However, disjointed implementation and lack of coherency in respite policy has hampered the consistent availability of respite care and limited its positive effects. Provision of respite care can be improved by an improved understanding of the meaning of respite for stakeholders and a negotiation of these sometimes opposing points of view. This article presents an argument for a model of service delivery that builds on a shared understanding of respite among stakeholders. This shared understanding is seen as generating a move toward integrated service development, recasting respite as part of a continuum of family support services in which funding policies give families more control. A shared understanding can be a foundation for the training, communication, funding flexibility, and mutual trust among stakeholders. Respite care provided in an integrated framework moves beyond the basic function of a break in caring for overburdened carers to one that can provide support for family coping and resilience.
Does respite care reduce parental stress in families with developmentally disabled children
- Authors:
- CHAN Jeffrey B., SIGAFOOS Jeff
- Journal article citation:
- Child and Youth Care Forum, 30(5), October 2001, pp.253-263.
- Publisher:
- Springer
Reviews studies that have evaluated the effects of respite care services used by families who have children with developmental disabilities, with an emphasis on parental stress. The results of this review suggest that, at least in the short-term, respite care is associated with significant reductions in parental stress for the majority of parents who use it. However, the number of stories on this issue was relatively small and many studies have significant limitations.
Adults with intellectual disability in long-term care: a qualitative study
- Authors:
- CHAN Jeffrey B., et al
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 26(4), December 2001, pp.339-344.
- Publisher:
- Taylor and Francis
Although respite care is intended to provide short-term and temporary relief for caregivers, it has unintentionally become a long-term placement for some individuals with developmental disability. This Australian study audited the files of 10 adults with developmental disability who had been living in three respite care units for 12-24 months. Several individual (e.g., challenging behaviours, severe disability, lack of communication skills) and family characteristics (e.g., single parent/carer status, poor health, and non-English speaking background) appeared consistent across the sample. The results suggest that there may be benefit in systematic planning for respite care, especially with older single-parent families who have adult children with high support needs, challenging behaviour, and severe communication impairment.
A review of child and family characteristics related to the use of respite care in developmental disability services
- Authors:
- CHAN Jeffrey B., SIGAFOOS Jeff
- Journal article citation:
- Child and Youth Care Forum, 29(1), February 2000, pp.27-37.
- Publisher:
- Springer
This article reviews the literature on child and family characteristics that influence the use of respite care among families who have a child with a developmental disability. On the child side, these characteristics include severity of disability, level of required care, presence of challenging behaviours, and communication difficulties. On the family side, relevant factors include level of family stress, access to support systems, and family size. In some cases, marital status may also influence the decision of a parent to make use of respite care. Knowledge of these factors would seem crucial for effective planning and organisation of respite care.
Issues emanating from the implementation of policies on restraint use with people with intellectual disabilities
- Authors:
- RICKARD Eion David, CHAN Jeffrey, MERRIMAN Brian
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 10(3), 2013, pp.252-259.
- Publisher:
- Wiley
This article first outlines some of the negative consequences of restraint use that have led to minimal use policies and then outlines some of the alternative interventions and strategies that are emerging as alternatives. Recent changes in the regulation of restraint use in the Republic of Ireland and the state of Victoria in Australia are then examined, to show how cultural and historical contexts of policy can lead to differences. The authors argue that a gap remains between our understanding of the place of implementing restrictive practices with respect to service provision and their actual applications by providers. They conclude that such discordance between policy and practice needs to be addressed by stronger regulation. (Original abstract)
Disability support workers’ knowledge and education needs about psychotropic medication
- Authors:
- DONLEY Mandy, CHAN Jeffrey, WEBBER Lynne
- Journal article citation:
- British Journal of Learning Disabilities, 40(4), December 2012, pp.286-291.
- Publisher:
- Wiley
In Australia, disability support workers are the predominant workforce employed to support people with an intellectual disability. Many support workers are required to assist people they support to take psychotropic medications in the form of chemical restraint. Support workers in Australia receive limited education and training in this area and as a result may miss important information about effects of medication on the people they support. In this study, support workers were asked about their education and training needs around chemical restraint. The results showed that while the majority of support workers felt they were provided with good support from their co-workers and supervisors, they felt they need more specific information regarding the side effects of psychotropic medication and its alternatives. Finding ways to support the support workers is crucial to minimise the use of chemical restraint and provide best support possible to people with disabilities. Implications for practice are discussed.
Restrictive interventions for people with a disability exhibiting challenging behaviours: analysis of a population database
- Authors:
- WEBBER Lynne S., McVILLY Keith R., CHAN Jeffrey
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 24(6), November 2011, pp.495-507.
- Publisher:
- Wiley
People with an intellectual disability whose behaviours are perceived to be of serious harm to themselves or others are at risk of being subjected to restrictive interventions. Prevalence rates are difficult to determine because restrictive interventions are defined differently across jurisdictions and because means of data collection vary. Most research is unable to draw on the results of population-level data. This study reports the use of chemical and mechanical restraint and seclusion in the State of Victoria, Australia, over a 12-month period. The data reported are those collected by government and community service organisations in keeping with their statutory obligations. At the beginning of the study 152 service providers were registered to use restrictive interventions. During the course of the year-long study just under 31,000 episodes of restrictive interventions were reported involving 2102 people; the majority were subjected to chemical restraint. The use of restraint was found to be routine rather than a strategy of last resort. Consistent with data from the UK and USA, those subjected to restrictive interventions were more likely to be young males with multiple disabilities, including autism. The authors conclude that systemic policy and procedural developments are needed to address current use of restrictive interventions, together with a longitudinal study to evaluate the effectiveness, of alternative, non-restrictive strategies.