Jeffrey Chan

Realizing Human Rights in Clinical Practice and Service Delivery to Persons with Cognitive Impairment who Engage in Behaviours of Concern 1

Recent national and international legal developments have intensified the need for clinicians and service providers to understand and apply human rights in clinical practice and service delivery to persons with cognitive impairment who engage in behaviours of concern. Treatment and service interventions must now be subordinated to even more explicit human rights-related legal and ethical constraints and also to affirmative human rights-related objectives. The ability of clinicians and providers to engage in competent human rights analysis is a necessary methodological implication of this paradigm shift. In this paper we elaborate a formative method of human rights analysis that is being developed to assist the Victorian Office of the Senior Practitioner to apply human rights standards recognized under the Victorian Charter of Human Rights and Responsibilities to persons with cognitive impairment who engage in behaviours of concern. This approach relies significantly upon the CRPD as an interpretive aid to enliven Charter rights to specific human rights concerns faced by persons with disability. Although developed in a specific statutory and organizational context, this model has potential for broader application.

Combating Violence & Abuse of People with Disabilities: A Call to Action

This book is timely and important given the United Nations Convention on the Rights of People with Disabilities (UNCRPD) and Optional Protocol on 3 May 2008. Articles 15 and 17 of the UNCRPD, in particular, make it very clear that countries must protect the physical and mental integrity of persons with disability (Article 17), guarantee freedom from torture and from cruel, inhuman, or degrading treatment or punishment, and prohibit medical or scientific experiments without the consent of the person concerned (Article 15). Whilst there have been significant improvements in the lives of people with disability, as noted in the foreword of the book, the abuse of and violence against people with disability continues to occur everyday around the world. Hence, it is incumbent upon us who work in the disability sector to act swiftly and effectively to uphold and protect the rights of those with disability. As such, this book serves as a rallying cry for people with disability and people who are involved in services for this group. Although written primarily for adults with disability, this book is an important resource for others including families, friends, professionals, and advocates. It is particularly useful for law enforcement services as it provides an understanding of the issues from the perspectives of people with disability. The book is skilfully written; its straightforward and reflective style engages the reader by providing practical tips and current evidence. The use of life stories of people and of the author, as well as quotes or newspaper headlines throughout adds to the realistic dimension of the book and enhances its practical utility. The use of such stories, newspaper headlines and quotes deliver a sense of urgency to the reader to act on this matter. The book also provides a resource list of accessible websites, training materials (e.g., video, DVD), and suggested readings. All these serve to empower the reader in a step-by-step process to problem-solve and prevent the occurrence of abuse of people with disabilities. There are eight chapters in the book; each chapter includes Ask Yourself questions to assist the reader to reflect more deeply on the topics covered and, more importantly, the application to practice. Chapter 1 builds the framework of guiding principles and values important to combating abuse. These important principles include empowerment and strengthening advocacy. Listening and learning from people with disability with a focus on their strengths rather than their limitations are critical stepping-stones highlighted in the book. Chapter 2 provides an overview of the models of disability and the relationship to the theories of violence and abuse of people with disability. The life story of Keisha highlights the vulnerability of people with disability, and the chapter facilitates further reflections through life stories. Chapter 3 is challenging as it focuses on the types and indicators of abuse and violence, and a summary of the compelling research evidence for each indicator. The tables of indicators of abuse presented provide a practical and convenient checklist. Chapter 4 examines the systemic and organisational barriers that people with disability are subjected to when experiencing abuse and violence perpetrated against them. It highlights, for example, the attitudinal barriers people face and myths generated about people with disability, such as the credibility of the person’s evidence and version of events. Chapter 5 explores the personal barriers and helplessness of people with disability who are confronted with abuse and violence. A series of probing questions aim to steer the reader to challenge these personal barriers and to take control of the problem. Chapter 6 provides an overview of the services, agencies, and laws that are designed to protect people’s rights. While the service and legal system described in the book are from the North American context, there are some practical tips that may be useful to readers in other developed countries. Readers from developing countries may find this chapter less applicable to their own judicial systems. Chapter 7 builds on the self-empowerment theme of the book. It highlights practical strategies Journal of Intellectual & Developmental Disability, March 2010; 35(1): 48–49

The Use of Restrictive Interventions in Victoria, Australia: Population Data for 2007-2008.

The once common use of restrictive interventions (the use of restraint and seclusion) for controlling the behaviour of people with an intellectual disability is now coming under greater scrutiny by government and community sector services. Questions are being raised with respect to the clinical efficacy and ethical appropriateness of such interventions (Allen, 2009; McVilly, 2009; Sturmey, 2009). In Victoria, Australia, the Senior Practitioner was established in 2007 by the Disability Act (2006) to protect the rights of people with a disability who are subjected to restrictive interventions or compulsory treatments, and who are in receipt of a disability service funded by the Department of Human Services’ Disability Service. Among other functions, the Senior Practitioner is mandated by the Disability Act (2006) to monitor and review the use of restrictive interventions in Victoria. All disability service providers who use restrictive interventions are required to register with the Senior Practitioner, appoint an Authorised Program Officer (APO) to monitor the use of these practices within their own service, and report the use of chemical and mechanical restraints and seclusion to the Senior Practitioner using the Restrictive Intervention Data System (RIDS). The data included in this paper summarise findings from the first 12 months of operation of the Office of the Senior Practitioner’s RIDS as collated at March 2009. The collection and analyses of these data are important because we know little about the prevalence of the use of restrictive interventions in disability services in Australia and, consequently, have a paucity of evidence to inform the development of policy and monitor practice. If similar data were systematically collected by other jurisdictions and shared in a comparable format, it would be possible to provide national benchmarking around the use of restrictive interventions. This information could assist in promoting and monitoring service quality as well as assist in decision making around the distribution of finite resources to support people who are most at risk of poor outcomes in relation to their health and well-being, and the denial of their human rights. Such crossjurisdictional benchmarking is commonly accepted in other areas of health and community services as an evidence-based mechanism to promote and monitor service quality (e.g., Australasian Rehabilitation Outcomes Centre, http://chsd.uow.edu.au/ aroc/; National Mental Health Seclusion & Restraint Project, http://www.nmhsrp.gov.au/c/mh). However, no such analysis and benchmarking is currently possible across disability services in Australia.

Adults with intellectual disability in long-term respite care: a qualitative study

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. In an effort to understand why some individuals remain in respite care on a long-term basis, we 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.

Stolen voices: Facilitated communication is an abuse of human rights

Abstract Despite the overwhelming research evidence discrediting the validity of Facilitated Communication (FC), Lilienfeld, Marshall, Todd and Shane (2015) have demonstrated that the use of FC is still prevalent in disability service and educational settings. They have comprehensively examined the persistence of FC, provided reasons for its persistence, and formulated key recommendations to address the insidious spread of FC. We concur with Lilienfeld et al. as depressing as it may be, particularly regarding the continued use of FC by clinicians, educators and researchers. Drawing upon our experience as practitioners in the field of intellectual and developmental disability, we offer the view that it is important to argue against FC from a human rights perspective using the United Nations Convention on the Rights of Persons with Disabilities (2006). Put simply, FC is an abuse of human rights.

Applying the CRPD to Safeguard the Rights of People with a Disability in Contact with the Criminal Justice System

People with disability and those who have complex needs are often at risk of offending. Until recently, there has been a paucity of research on how the rights of people with disabilities are safeguarded when they who come into contact with the criminal justice system, in terms of assessment, intervention and monitoring. Clinical practitioners need to be aware that they have a responsibility to safeguard the rights of people with disabilities. The ratification of the United Nations’ Convention on the Rights of Persons with Disabilities (CRPD) and an associated Optional Protocol provide a way to examine these rights with the view of implementing them in day-to-day clinical practice and service delivery. In this article we use the CRPD framework to apply a human rights perspective to people with disabilities in the criminal justice system and illustrate its potential application on a case study of a person who was incarcerated.

Restraint and Seclusion of People on Compulsory Treatment Orders in Victoria, Australia in 2008–2009

In Victoria, people with an intellectual disability who have shown behaviour that is a significant risk of serious harm to others may be detained within government-funded disability accommodation by either a court or civil order. The aim of such orders is both to protect the public and at the same time provide treatment to the person with a disability, so that the person will be able to return to live more independently within the community. Little is known about the characteristics or use of restraint and seclusion with this particular group. Thus, the aim of this study was to examine this groups characteristics and compare the use of restraint and seclusion to other people with an intellectual disability who were subjected to restraint and seclusion, but not detained. The practice and policy implications of the results are discussed from an interdisciplinary perspective with recommendations for professionals working in the field.

An exploratory study of crime and brain injury: Implications for mental health management

Abstract There is emerging evidence to link criminal offending and brain injury, but there is still limited research in this area, in particular for people with brain injury and psychiatric disorders. To explore this issue, we reviewed 276 individuals presented to the New South Wales Mental Health Review Tribunal (MHRT), an independent agency that reviews people who are deemed not guilty of offending by reason of mental illness. Nine individuals (3.3%) were identified with brain injury and psychiatric disorders, the majority as a result of non-traumatic brain injury related to alcohol and substance abuse. All of them were male. They were diagnosed with serious psychiatric disorders such as paranoid psychosis and schizophrenia and had committed serious offences such as murder, intent to murder, sexual assault and physical assault. Most had previous psychiatric, criminal, and alcohol and substance abuse histories. Two case studies suggest a lack of treatment follow-up. The study suggests an urgent need to consider early intervention and how services are offered post-rehabilitation, and the importance of collecting and maintaining data to ensure appropriate mental health management and policy formulation.

Clinical governance: a relevant clinical practice framework to prevent the use of restrictive practices

Aim: The health-related behaviours of people with intellectual disabilities (ID) are strongly influenced by cultural and social factors such as organisational context yet this has rarely been investigated. This study explores the organisational barriers and solutions to the promotion of healthy lifestyle behaviours for this population. Method:Qualitative methodology was used. Focus groups and interviews were undertaken with staff and managers of residential services. Staff job descriptions were also collected from these services. Thematic content analysis was employed. Results: Three overarching themes were identified. The first two themes relate to organisational barriers to promoting health for individuals with ID. These themes focussed on highlighting how administration and routine tasks were prioritised over the promotion of regular physical activity and a healthy diet. The third theme relates to enablers or strategies for implementing health promotion activities. Conclusions: These findings have international implications on how organisations support people with ID to be more aligned with promoting health.They also highlight the need for organisational culture to facilitate knowledge translation and embrace evidence-based health promotion interventions.Aim: Life expectancy of people with intellectual disability (ID) has increased along with that in the general population. The aims were to estimate prevalence of older people with intellectual disabilities (ID) during 2004-2012, and identify differences in prevalence across counties in Sweden. Method: Individuals aged 55+ years were identified through two national registers; the LSS register and the death register from the Swedish National Board of Health and Welfare. Results: The prevalence of ID was 444 per 100,000 population among the youngest age group 55-59 years old, and it decreased steadily to 65 per 100,000 population among those aged 80+ years old. Higher prevalence was found among men in the youngest age group. Northern counties in Sweden had higher prevalence, whereas prevalence in the middle and the southern regions demonstrated a more widespread distribution. Conclusions: This national study fills the knowledge gap about spatial distributions of older people with ID in Sweden. There is a need to investigate allocated resources and the quality of social service and care provided to individuals with ID in different counties in Sweden. (Less)Full access scientific oral presentations first published: 22 july 2016 https://doi.org/10.1111/jir.12305 citations: 1 maastricht university find full textaboutsectionspdfpdf toolsrequest permissionexport citationadd to favoritestrack citation share give accessshare full text accessshare full text accessplease review our terms and conditions of use and check box below to share full-text version of article.i have read and accept the wiley online library terms and conditions of use.shareable linkuse the link below to share a full-text version of this article with your friends and colleagues. Learn more.copy urlshare a linkshare onemailfacebooktwitterlinkedinreddit psychological coping styles in mothers of children with rare genetic syndromes: associations with mental health d. Adams (conference@dawnadams.co.uk)*, n. Jackson, e. Karakatsani and c. Oliver cerebra centre for neurodevelopmental disorders & university of birmingham, united kingdom aim: to document coping styles used by mothers of children with rare genetic syndromes and explore how these relate to positive and negative maternal mental health. Method: 89 mothers of children with rare genetic syndromes completed questionnaires assessing maternal mental health (hospital anxiety and depression scale, positive and negative affect scale) and maternal coping styles (brief cope). Results: the most frequently reported coping style was problem-focussed coping, and the least frequent was religious/denial. Coping styles were not associated with child age or ability, but were significantly associated with maternal mental health. Higher levels of active avoidance were associated with higher levels of negative affect and increased levels of anxiety and depression. Conversely, higher levels of problem-focussed and positive coping styles were associated with higher levels of positive affect. Conclusions: although this study cannot comment on causation between coping styles and mental health, the identification of a relationship between coping styles and mental health (both positive and negative) highlights a key area for intervention.

How do Australian disability support organisations describe the disability support worker position

Aim: The health-related behaviours of people with intellectual disabilities (ID) are strongly influenced by cultural and social factors such as organisational context yet this has rarely been investigated. This study explores the organisational barriers and solutions to the promotion of healthy lifestyle behaviours for this population. Method:Qualitative methodology was used. Focus groups and interviews were undertaken with staff and managers of residential services. Staff job descriptions were also collected from these services. Thematic content analysis was employed. Results: Three overarching themes were identified. The first two themes relate to organisational barriers to promoting health for individuals with ID. These themes focussed on highlighting how administration and routine tasks were prioritised over the promotion of regular physical activity and a healthy diet. The third theme relates to enablers or strategies for implementing health promotion activities. Conclusions: These findings have international implications on how organisations support people with ID to be more aligned with promoting health.They also highlight the need for organisational culture to facilitate knowledge translation and embrace evidence-based health promotion interventions.Aim: Life expectancy of people with intellectual disability (ID) has increased along with that in the general population. The aims were to estimate prevalence of older people with intellectual disabilities (ID) during 2004-2012, and identify differences in prevalence across counties in Sweden. Method: Individuals aged 55+ years were identified through two national registers; the LSS register and the death register from the Swedish National Board of Health and Welfare. Results: The prevalence of ID was 444 per 100,000 population among the youngest age group 55-59 years old, and it decreased steadily to 65 per 100,000 population among those aged 80+ years old. Higher prevalence was found among men in the youngest age group. Northern counties in Sweden had higher prevalence, whereas prevalence in the middle and the southern regions demonstrated a more widespread distribution. Conclusions: This national study fills the knowledge gap about spatial distributions of older people with ID in Sweden. There is a need to investigate allocated resources and the quality of social service and care provided to individuals with ID in different counties in Sweden. (Less)Full access scientific oral presentations first published: 22 july 2016 https://doi.org/10.1111/jir.12305 citations: 1 maastricht university find full textaboutsectionspdfpdf toolsrequest permissionexport citationadd to favoritestrack citation share give accessshare full text accessshare full text accessplease review our terms and conditions of use and check box below to share full-text version of article.i have read and accept the wiley online library terms and conditions of use.shareable linkuse the link below to share a full-text version of this article with your friends and colleagues. Learn more.copy urlshare a linkshare onemailfacebooktwitterlinkedinreddit psychological coping styles in mothers of children with rare genetic syndromes: associations with mental health d. Adams (conference@dawnadams.co.uk)*, n. Jackson, e. Karakatsani and c. Oliver cerebra centre for neurodevelopmental disorders & university of birmingham, united kingdom aim: to document coping styles used by mothers of children with rare genetic syndromes and explore how these relate to positive and negative maternal mental health. Method: 89 mothers of children with rare genetic syndromes completed questionnaires assessing maternal mental health (hospital anxiety and depression scale, positive and negative affect scale) and maternal coping styles (brief cope). Results: the most frequently reported coping style was problem-focussed coping, and the least frequent was religious/denial. Coping styles were not associated with child age or ability, but were significantly associated with maternal mental health. Higher levels of active avoidance were associated with higher levels of negative affect and increased levels of anxiety and depression. Conversely, higher levels of problem-focussed and positive coping styles were associated with higher levels of positive affect. Conclusions: although this study cannot comment on causation between coping styles and mental health, the identification of a relationship between coping styles and mental health (both positive and negative) highlights a key area for intervention.