the human rights agenda for persons with intellectual ...

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Although there is no specific “Right to Consent to Treatment”, the. Declaration ..... Angela's story and the Ashley Treatment bring to light human rights violations ...
The Rights Agenda  

THE HUMAN RIGHTS AGENDA FOR PERSONS WITH INTELLECTUAL DISABILITIES Edited by Dorothy Griffiths, Frances Owen and Shelley L. Watson

Rights, Respect, Responsibility

The 3Rs Community University Research Alliance Brock University and Community Living Welland- Pelham

The Rights Agenda

Published by the 3Rs Community University Research Alliance of Brock University and Community Living Welland-Pelham, Brock University, St. Catharines, Ontario L2S 3A1.

Copyright @2011 by Brock University

All rights reserved. No part of this publication may be reproduced or transmitted in any form including electronic or photocopying or storage in a data storage anad retrieval system, without written permission for the publisher.

Cover artwork created by Stephen Agnew

The Rights Agenda

DEDICATION To all those who continue to strive for the authentic enactment of human rights in all facets of human life

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Message from People First Welcome to the Rights Agenda Book!

People with disabilities have fought many years to get any kind of rights. The United Nations Convention on the Rights of Persons with Disabilities is very important now and we must move forward to ensure that everyone is treated fairly! Why do we have to fight every day? We should not have to fight for who we are! Unless we stand up and do something, things won't improve. We need to challenge ourselves to do more! We need to challenge governments to do more! It is important that we all renew our commitment to ensuring that every person with disabilities has the same rights as everyone else! When we renew the commitment it is very important that we follow through on the many rights out there that have not been in the public eye. Kory Earle President – People First of Ontario May 16, 2011  

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Acknowledgements The editors are indebted to the many presenters and participants from around the world who contributed to the Human Rights and Persons with Intellectual Disabilities Conference in April 2010. This event was an opportunity for self-advocates, family members, care providers, policy makers, and researchers to share their commitment to a common goal: the promotion of human rights for all. This Conference would not have been possible without the tireless dedication of our partner organizations and an army of volunteers who worked for many months to prepare for and, ultimately, to run the conference. A special thanks to our core committee members Barbara Vyrostko (Co-Chairperson), Deborah Richards (Conference Coordinator), Brandy Sokoloski (Event Coordinator), Stephen Agnew, Sheila Bennett, Tiffany Gallagher, Frances Owen and Shelley Watson. The publication of this book as a companion to the 2010 Human Rights and Intellectual Disabilities Conference: Towards a Rights Agenda was made possible by the generous financial support of the Social Sciences and Humanities Research Council of Canada, the Canadian Department of Justice Innovations and Partnership fund, and the Law Foundation of Ontario. We are indebted to them for their support. The editors are enormously grateful to Melissa Legree for her expertise in reviewing and proofreading this document. Her skill was invaluable to the completion of this project. Dorothy Griffiths (Co-Chairperson)

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TABLE OF CONTENTS Page Foreword Dave Hingsburger Introduction: A Rights Agenda Dorothy Griffiths, Frances Owen and Shelley L. Watson

1 5

Preface on Human Rights and Intellectual Disabilities Timothy Endicott

15

Chapter 1- Right to Exist and to Life-sustaining Measures Shelley Watson, Tim Stainton and Dick Sobsey

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Chapter 2- Right to Community Living Frances Owen and Gillian MacKinnon

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Chapter 3- The Right to Accessible Healthcare for Persons with Intellectual Disabilities Shelley L. Watson and Stephanie Hayes Chapter 4- Inclusion, Schooling, and Transition to Work: A Work in Progress Sheila Bennett and Tiffany L. Gallagher Chapter 5- Human Rights and Sexuality and Relationships Deborah A. Richards, Shelley L. Watson, Shannon Monger and Chrissie Rogers Chapter 6 – A Right to Parent: Supports for Parents with Intellectual Disabilities and their Children Maurice Feldman, Virginia Cruz, Julianne Hay, David McConnel and Christine Tardif-Williams

79

109 133

169

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Chapter 7- The Right to Consent to Treatment Shelley L. Watson, Deborah A. Richards, Stephanie Hayes, Jocelin Lecomte and Chris Taua

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Chapter 8- Rights and the Justice System Jeffery Hamelin, Voula Marinos, Jennifer Robinson and Dorothy Griffiths

223

Chapter 9- Human Rights and Self-Advocacy Donato Tarulli and Robyn Saaltink

255

Chapter 10- Human Rights: Where we are and where we’re going 277 Orville Endicott    

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CHAPTER 7 THE RIGHT TO CONSENT TO TREATMENT Shelley L. Watson, Deborah A. Richards, Stephanie Hayes, Jocelin Lecomte, and Chris Taua

INTRODUCTION Although there is no specific “Right to Consent to Treatment”, the Declaration on the Rights of Persons with Disabilities (United Nations, 2006) is very clear that individuals with disabilities have the right to participate in decision-making regarding their own physical and mental health or other types of treatment. Several articles are pertinent when addressing the right to consent to treatment decisions, including Articles 3a (General principles), 5 (Equality and non-discrimination), 7 (Children with disabilities), 12 (Equal recognition before the law), 14 (Liberty and security), 15 (Freedom from torture or cruel, inhuman or degrading treatment or punishment), 17 (Integrity of person), 22 (Privacy), 23 (Home and family), and 25 (Health; United Nations, 2006). Article 3 outlines the general principles governing the Convention and 3a states the right for the “[r]espect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons”, and that according to Articles 5 and 12 individuals with intellectual disabilities are entitled to equality and non-discrimination (including but not limited to equal protection and benefit of the law, equal recognition before the law, and nondiscrimination). Article 7 emphasizes that in all actions concerning children with disabilities, the best interests of the child shall be a primary consideration, while Article 14 ensures that any deprivation of liberty is in conformity with the law. Addressing cruel, inhumane or degrading treatment, Article 15 articulates the importance of consent, while the physical and mental integrity of an individual is emphasized in Article 17. Article 22 asserts that no person with disabilities,

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regardless of place of residence or living arrangements, shall be subjected to arbitrary or unlawful interference with his or her privacy and Article 23 states that persons with disabilities, including children, retain their fertility on an equal basis with others. Finally, Article 25 recognizes that persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability. Each of these articles and their pertinence to the consent to treatment are discussed throughout this chapter. Consent is defined as the ability of an individual to choose what they consider best for themselves, insofar as they do not subject others to the consequences of their actions (Cea & Fisher, 2003). The decision to receive treatment must be voluntary, individuals must be informed about the nature and purpose of the treatment, and must comprehend the benefits, risks, and alternatives available (Cea & Fisher, 2003; Lunsky et al., 2009). The same principles apply to an individual who has decided to refuse treatment; the decision must be made voluntarily, and they must be fully informed about the associated consequences of proceeding untreated (Lunsky et al., 2009). Perske (1972) emphasizes “dignity of risk”, where individuals with disabilities who have the ability to consent, must be allowed to make a decision even if his or her caregivers or family members do not agree with that decision.     In Canada, patients need not be able to understand that their condition constitutes an illness to be found capable of consenting to or refusing treatment. The focus should be on their ability to understand that they are affected by the condition’s manifestations. A patient’s “best interests” are not relevant to the capacity determination; the right of the capable patient to refuse treatment and the irrelevance of the patient’s best interests are what are pertinent. As such, patients cannot be found incapable because they deny they are ill; ability to recognize the manifestations of their condition suffices. The capable patient’s right to refuse treatment and the irrelevance of the patient’s best interests are binding throughout Canada (Starson v. Swayze, 2003). The principle of autonomy therefore requires that any action that has consequences for another person be subject to the consent of the person involved; without this consent, the action is not legitimate (Hanson, cited in Lecomte & Mercier, 2009).

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The right to consent hinges on the assumption that the primary care provider is proposing appropriate care and that the recipient knows what and how to ask questions and participate in the decision-making process. Valuing autonomy in the process results in thinking about free and informed consent as bi-directional; the first direction is from the initial proposition of treatment by the health care provider and the patient’s right to refuse; the second direction is from the patient’s right to propose a course of treatment and the health care provider’s role to support patient-directed care. When applying the principles of autonomy to persons with disabilities, it is important to recognize that a disability does not necessarily mean that a person is incapable of free and informed consent, but that the capacity is individual-, decision- and time-specific and needs to be constantly re-evaluated (Sullivan et al., 2010). Researchers have suggested that half of all adults with mild intellectual disability and approximately 20% of those with moderate intellectual disability are able to independently appreciate and evaluate the risks and benefits of the relevance and alternatives related to proposed treatments (Cea & Fisher, 2003; Wong, Clare, Holland, Watson, & Gunn, 2000). Nevertheless many adults with intellectual disabilities still have difficulty realizing that alternatives exist, understanding the proposed options for treatment, weighing benefits and risks of such alternatives and the long-term effects of their decisions, as well as coping with the stress of decision-making. Further challenges arise related to the difficulty adults with intellectual disabilities may have related to being cognizant of their own values and future life plans; communicating their preferences, values, or future life plans; and connecting these preferences, values and plans to their current decisions. For example, some women with intellectual disabilities are not encouraged to make their own choices with regards to contraception, have limited understanding about their options and how it relates to their future life plans, preferences, and values (Ignagni & Patterson, 2010, April). Instead of making an informed choice, this has been termed informed compliance (Ignagni & Patterson, 2010, April). The reality is that some adults with intellectual disabilities may need support to exercise their capacity to direct their own health care and make their own informed decisions. It is therefore important that those providing the information to an individual with an intellectual disability are making available adequate

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time for them to absorb the information while considering their knowledge of the world and their communication needs. Article 25 of the Convention on Rights of Persons with Disabilities (United Nations, 2006) addresses this issue and advocates that professionals provide care of the “same quality”, including equal access and support of free and informed consent. With the ratification of the convention comes a paradigm shift affirming the need for more understanding in the application of human rights to treatment and interventions for people with disabilities (French, Chan, & Carracher, 2010). This paradigm shift emphasizes the social model of disability, which is the interaction between a person with a disability and the challenges of the social and physical environment within which they live, stressing the importance of full and effective participation, social inclusion, and the right to equality and non-discrimination based on disability (French et al., 2010). What this means is that treatments and interventions should not focus on “curing” disability, but should focus on supporting people with disabilities to exercise their human rights and fundamental freedoms on par with people without disabilities and to overcome social and physical barriers experienced as a product of differences of human diversity (French et al., 2010). In other words, the new paradigm seeks to change society and asks people who support individuals with disabilities to emphasize positive measures to realize their potential and overcome pre-existing disadvantages (French et al., 2010). Changing society’s view of disability to one that supports “dif”ability, suggesting that some people simply have different abilities, emphasizes the need to implement treatments, interventions, therapies, and accommodations that positively enhance the lives of people with disabilities. The new human rights paradigm highlights the need to support the differences of people with disabilities and to promote their full participation in society. The use of restraints, punishment, social isolation, and compulsory treatment are commonly the focus of discourses on human rights violations and although these are major barriers to autonomy and liberty and raise ethical and legal considerations, they are not the primary focus of this chapter (French et al., 2010). What we will address here is how to better apply the human rights convention to the daily lives of people with disabilities who require assistance or accommodations in order to uphold the

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principles of full and effective participation, social inclusion, and the right to equality and non-discrimination. We often overlook the possibility for human rights violations when choosing and implementing various treatments, interventions, therapies or accommodations and the new paradigm emphasizes the need to understand and promote human rights while ensuring treatment choices are based on positive measures. As opposed to the previously mentioned negative measures (e.g., restraints or punishment), which are associated with obvious challenges to human rights (violations of autonomy and liberty), conventional treatments often pose more subtle challenges. Regardless of whether it is called a strategy, treatment, intervention, therapy, or accommodation, treatments can range from something seemingly inconsequential to something with the potential for long-term harm. People with disabilities are entitled to the best treatments and interventions based on their own individual characteristics and needs, while best supporting the realization of their full potential and human rights. The new paradigm resulting from the convention values the need to choose treatments that are not only reflective of the tenants of the convention, but that are based on empirical evidence of its safety and effectiveness. At the heart of this provision of service are consent to care and the capacity for the individual to provide consent to service. It is important to consider whether or not the person is capable of giving consent in general, to specific care in particular, and at a precise moment in time.

Legal and Consent Issues Consent must be addressed and re-addressed when proposing or accessing each specific service, whether it be consent to a medication or to a procedure, and should be based on the exercise of clinical judgment. Clinical judgment is the starting point of care and is “the application of information based on actual observation of a patient combined with subjective and objective data that lead to a conclusion” (Mosby, 2009). According to this definition, the clinician is at the heart of the consent to care process and emphasizes their training, direct experience with others, and their specific knowledge of the individual and their environment (Schalock & Luckasson, 2005).

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However, there are also pitfalls associated with the practice of clinical judgment as there is a tendency to consider the person apt if they consent and inept if they refuse (Lecomte & Caux, 2009; Lecomte, Moxness & Aunos, 2010). In addition, clinicians can lose perspective or may be biased when they act in the roles of both case manager and the evaluator of capacity to consent (Lecomte & Caux, 2011; Khouri & Philips-Nootens, 2005). It is also important to be mindful that incapacity does not equate the need for the establishment of protective supervision measures or guardianship, but that it is specific to the inability to take care of one’s self or one’s property and the need to be protected (i.e., from isolation, or due to the nature of his/her affairs). Not to be confused with legal guardianships that are needed in order to intervene regarding incapacity or matters of protection, a lack of guardianship is not an inability to consent. In fact it is often the case where the presence of a legal guardian may facilitate an individual’s capacity to consent (Lecomte et al., 2010). What is needed is an action plan to build capacity to consent by marrying the legal model for evaluating the ability to consent with the characteristics of the clinical realm. According to researchers, clinicians, and physicians (Cea & Fisher, 2003; Lunsky et al., 2009), some of the clinical characteristics of capacity to consent to care include the fact that capacity fluctuates with time and therefore needs to be addressed and readdressed. In addition, it varies according to the complexity and importance of the proposed care, such as whether it is life saving versus life enhancing (Cea & Fisher, 2003; Lunsky et al., 2009). Standardization of the evaluation of consent is difficult because capacity to consent is unique for every individual and is not static as it changes depending on many factors over time (Cea & Fisher, 2003; Lunsky et al., 2009). Also, the ability to give consent varies with each procedure or treatment; therefore an individual may be able to provide informed consent for one, but not another (Hurley & O’Sullivan, 1999; Lunsky et al., 2009). Some of the legal characteristics to capacity to consent to care include: the presumption of capacity is assumed until otherwise proven, made on a case-by-case basis, highly individualized, and that there exists in Canada, a legal model for evaluation of capacity to consent to care. In Quebec, a person is deemed able to consent to care if they understand: their condition, the nature and purpose of the

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treatment, the risks associated with the treatment, the risks associated with not receiving the treatment, and if their ability to consent is impaired by their condition. However, it is important to note that the presumption of incapacity is often initially presumed with individuals with an intellectual disability until proven capable, which is in conflict with the nature of the legal model. In determining whether or not a person is capable of consenting to treatment, Appelbaum and Grisso (1988) have stated that although the legal standards vary by jurisdiction in the United Sates, they can be categorized into the following four broad divisions of abilities related to (a) communicating choice, (b) understanding relevant information, and (c) appreciating the specific nature of the situation and related consequences. The final ability is the capacity to (d) manipulate information rationally, which is the ability to logically weigh the information such as risks and benefits associated with the decision. The assessment of capacity to consent is an inherent duty of the healthcare provider hinging on the abilities of the patient, and it therefore becomes a shared responsibility between the patient and their health care provider (Appelbaum & Grisso, 1988; Goldsmith, Skirton & Webb, 2008;   Lunsky et al., 2009). This model provides a helpful theoretical set of guidelines; however, it is not concrete enough and needs to be applied within the context of clinical judgment. Integrating both the legal model and the clinical characteristics of the individual therefore becomes both a challenge and a necessity when considering capacity to consent to service. Categorical refusal is based on a clear and unequivocal sign given from the person that they do not want the proposed care and relates directly to the ability to communicate choice (Appelbaum & Grisso, 1988). The ability to refuse specific proposed care hinges on the premise that the person must have enough organized thought processes to understand the refusal. For example, if an individual does not like to take medication or receive needles and always responds negatively, this is not enough for categorical refusal. The refusal must be unambiguous and not fluctuate over time or with the person offering care; needless to say that refusal is rare. This refusal is based on the concept of residual autonomy, which is a legal construct that recognizes that even though a person is unable to consent to care, she is still deemed capable, in very specific conditions, of vehemently and

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unambiguously opposing such care.     Clinicians must be wary, when confronted by a categorical refusal by an individual with an intellectual disability, of falling into defensive practice whereby the service provider recognizes a refusal and in response does not proceed with treatment. What a refusal means is that the service provider is required to either go back and examine other options that may be available and continue to work with the individual based on their needs or, proceed with court procedures where the end result may require a court order to impose treatment, if the court deems that such a course of action is necessary in order to protect the patient’s well-being (e.g., insulin injections, or other emergency medical treatment). A categorical refusal to treatment is something that concerns the whole establishment and highlights the importance of transdisciplinary teamwork in order to ensure that the rights and wellbeing of the individual are protected. So far we have reviewed the right to residual autonomy and categorical refusal, which is the right to refuse treatment or services, now we will explore what it means to consent to treatment or services. Consent to care allows a person with an intellectual disability to accept or refuse care (or any part of it), to change their decision to accept or not accept care – even if such a decision is not in their best interest or seems unwise to the service provider. It is important that consent must always be free and enlightened. Consent is considered free when it is willingly given and does not result from moral, physical, or social pressure or under threat of violence. Consent is considered enlightened when it is given with the full knowledge of all the facts. These facts must include information about the nature and seriousness of the illness and the proposed intervention. Information presented must also include the disclosure of advantages and disadvantages of various treatment options, possible complications, significant risks and any other unusual or particular risk associated with the treatment. In addition, information must be provided to explain the consequences if the illness or health issue goes untreated if treatment is refused. Consent is therefore the right of the individual to agree or disagree to treatment. This right applies to treatment for problematic behaviours as well as to medical treatment. The following sections will therefore address several areas of consent, including consenting to sterilization procedures, treatment for problematic sexual behaviour, autism treatment, and consenting to participate in research.

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Sterilization A key area of vulnerability where consent is so important is when dealing with birth control and menstrual management decisions. Historically, people with intellectual disabilities have been subjected to stigmatization, marginalization, segregation, and have been neglected and maltreated. For example, prompted by the eugenics movement from 1880 – 1940, selective breeding in the form of mass sterilization and segregation of individuals with disabilities became common practice (Karellou 2003; King & Richards 2002; Lumley & Scotti, 2001) in order to raise and safeguard “the purity of the race” (Wahlsten, 1997, p. 185). In 1942, the United States Supreme Court asserted that reproduction is a fundamental human right, which led to changes in the legality of sterilization of individuals with disabilities. However, before that time, organizations such as the American Cattle Breeders Society (cited in Sobsey, 1995) reported that “sexually segregated institutionalization and sterilization were the only acceptable means of eliminating people with mental retardation from society” (p. x). In Canada, two provinces adopted sterilization laws, British Columbia and Alberta. In 1928, the United Farmers of Alberta drafted the “Sexual Sterilization Act”, which allowed for a four-member decisionmaking body to decide and order the sterilization of any person that they deemed to have a mental defect (Grekul, 2008; Pringle, 1997). Between 1929 and 1972, the Alberta Eugenics Board took an aggressive approach, single-handedly approving the involuntary sterilization of 2,832 children and adults. In 1972, the Alberta government repealed the Sexual Sterilization Act; however, this decision was too late for those children and adults who had already been sterilized. It was not until 1995 when a woman in Alberta by the name of Leilani Muir spoke up on behalf of her human rights and became the voice for all those wrongfully sterilized (Richards, Watson & Muir, 2010, April). In 1955, at the age of 10, Leilani’s mother placed her in the Michener Center in Red Deer, Alberta's Provincial Training School for Mental Defectives. A year later, she found herself in front of Alberta's Eugenics Board. In 1959, Leilani was told she would need to have her appendix removed, but during this surgery and unbeknownst to her, her fallopian tubes were destroyed. She was 14 years of age and stripped of her reproductive rights.

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Years later, when Leilani was married and wanted to start a family, she discovered that she had been sterilized and was therefore unable to have children. In 1995, Ms. Muir took the Government of Alberta to court for wrongful sterilization with the Honourable Madame Joanne B. Viet presiding. After 6 months of court testimony, Leilani Muir was awarded $740,780 and later another $239,000 for legal costs. Justice Viet (1996) made her ruling: The damage inflicted by the operation was catastrophic, the wrongful stigmatization of Ms. Muir … has humiliated Ms. Muir everyday of her life, and the circumstances of Ms. Muir's sterilization were so high-handed and so contemptuous of the statutory authority to effect sterilization, and were undertaken in an atmosphere that little respected Ms. Muir's human dignity that the community’s [and] the court’s sense of decency is offended. Citing the pertinent human rights violations, Honourable Viet (1996) went on to say: The particular type of confinement of which Ms. Muir was a victim resulted in many travesties to her young person: loss of liberty, loss of reputation, humiliation and disgrace; pain and suffering, loss of enjoyment of life, loss of normal developmental experiences, loss of civil rights, loss of contact with family and friends, [and] subjection to institutional discipline. In 1986, Canada’s Supreme Court addressed a similar issue whereby a mother in Prince Edward Island petitioned the court for the right to have her adult child sterilized in order to avoid potential pregnancy. Known as the “Eve” decision, in this case the Supreme Court of Canada ruled that: Sterilization should never be authorized for nontherapeutic purposes under the parens patriae jurisdiction. In the absence of the affected person's consent, it can never be safely determined that it is for the benefit of that person. The grave intrusion on a person's rights and the ensuing physical damage outweigh the highly questionable advantages that can result from it. (E. (Mrs.) v. Eve, 1986)

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Although both Leilani Muir’s and Eve’s cases occurred many years ago, we are still faced with human rights issues when it comes to controlling the fertility of individuals with disabilities. It is often hard to separate out what is simply meant as menstrual control versus what is meant as a eugenic practice. Although involuntary sterilization is prohibited in Canada, the United States, Britain, and France, for example, hysterectomies are at times used as a means to manage menstruation as parents often argue that the pain, anxiety, increased vulnerability to violence, and risk of unwanted pregnancies are reason enough to have the procedure performed (Diekema, 2003). Moreover, as discussed in Chapter 4 on health care, some women with disabilities have asked for sterilization as a method to deal with painful periods (Huovinen, 1993). Recently the case of Angela, an 11 year old girl with Rett Syndrome in Australia, made international headlines when her parents successfully petitioned the court to allow a hysterectomy (Ormbsy, 2010). Three gynecologists supported the parents in court, testifying that Angela’s mentrual cycle was triggering seizures. The “Ashley Treatment” is an insidious procedure that is being advocated by many parents of “pillow angels”, a new category of disability representing individuals who are “permanently unabled”; pillow angels are individuals for whom survival was made possible only through recent medical advancements, have an infant level of intellectual and physical development, and are considered the “most vulnerable of society” (Pillow Angel, n.d.). The Ashley treatment consists of a hysterectomy to eliminate menstrual pain and cramps as well as the possibility of pregnancy, breast bud removal to eliminate the discomfort from large breasts, and estrogen therapy to reduce weight and height (Pillow Angel, n.d.). What this treatment aims to do is to “infantilize” the individual in order to reduce the burden of care on their caregiver. For example, with informed consent, Gunther and Dickema (2006) advocate hysterectomy and growth attenuation in children with profound intellectual disability so that parents may continue to care for their children at home without the restrictions imposed by continued growth of their child. These medical doctors believe that such procedures result in a greater quality of life for both the individual with a disability and their caregivers. Moreover, they

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argue that such interventions are both “medically feasible and ethically defensible” (p. 1014). Angela’s story and the Ashley Treatment bring to light human rights violations, plus they perpetuate the infantilization of individuals with disabilities. Disability groups such as Women with Disabilities Australia and the Disability Rights Education and Defense Fund (DREDF) have been very active discussing the rights violations inherent in such sterilization procedures, including the right to make choices about reproduction and the right to integrity of the person. Referring to the Convention on the Rights of Persons with Disabilities, the DREDF (2007) so poignantly states: Recognizing that the rights of people with disabilities to autonomy and personhood are still violated by many nations around the world, Article 17 of the Convention, entitled "Protecting the integrity of the person," reads, "Every person with disabilities has a right to respect for his or her physical and mental integrity on an equal basis with others." In our view, Ashley has been denied her basic human rights through draconian interventions to her person (p. 6). Paradoxically, Gunther and Diekema (2006) draw attention to the principle of nonmaleficence, to “do no harm” and do not believe grown attenuation or sterilization cause harm. The authors concede, “hysterectomy in children, particularly in the disabled, is controversial and invariably associated with the negative connotations and history of ‘forced sterilization’ (p. 1015), but “it is unlikely that such “infantilization” harms a person whose mental capacity will always remain that of a young child” (p. 1016). Moreover, they assert, “in these profoundly impaired children, with no realistic reproductive aspirations, prophylactic hysterectomy has several advantages” (p. 1015). Not only does the Ashley Treatment violate Article 17 on Integrity of Persons, but Article 7 on Children with Disabilities and Article 23 on the Home and Family are also dishonoured: “The best interests of the child shall be a primary consideration” (United Nations, 1989, Article 7) and “persons with disabilities, including children retain their fertility” (United Nations, 1989, Article 23) among others.

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It is also important to note that not only women with intellectual disabilities have been subjected to invasive procedures and sterilized without their consent. Nonconsensual sterilization of males has been relatively unexplored and rarely documented (Servais, 2006), but Carlson, Taylor, and Wilson (2000) reported that men with disabilities often receive drugs to decrease their sex drive or are surgically sterilized. Commonly these practices are carried out when treating problematic sexual behaviour.

Problematic Sexual Behaviour One of the core debates with regards to the rights of people with intellectual disabilities who display problematic sexual behaviour or who have been labelled as a sexual offender involves the use of therapeutic interventions. People with intellectual disabilities who sexually offend have the fundamental right to access effective and comprehensive treatment with the goal of improving quality of life and social inclusion. Ward and Connolly (2008) state that human rights “protect the core interests of human beings and help to ensure that their inherent dignity is respected by other members of the community and the state” (p. 87). This becomes the first challenge in the road towards treatment of problematic sexual behaviours, as it is recognized there must be a balance between the posed risk to others and the treatment needs of the individual. Due to the concern for community protection and risk, sex offenders are often managed and contained as opposed to treated (Ward, 2007; Ward & Connolly, 2003). Historically, the primary focus for treating and managing problematic and challenging behaviour of people with intellectual disabilities has been through the use of contingent aversive consequences and punishment (Gardner, Griffiths, & Whalen, 2002). Additionally, there is a strong held belief that individuals with intellectual disabilities who have problematic sexual behaviour cannot or are unable to improve and therefore require indefinite and full supervision (Fedoroff & Richards, 2010). When individuals are segregated, denied privacy, and excluded from treatment that may be beneficial, their rights according to the convention are being violated. Some of the specific articles in violation include Article 14, the Right to Liberty and Security of the Person and Article 22, the Respect for

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Privacy, which are not violated when an individual without an intellectual disability commits a sexual offence (United Nations, 2006). By offering limited chances for effective treatment that may reduce sexual offence recidivism and by focusing on segregation and supervision, the rights of people with intellectual disabilities are being neglected. It is significant to highlight that the primary focus for the legal system is to mitigate community risk; however, from a clinical outlook, the primary responsibility should be to support the human rights and wellbeing of the individual (Fedoroff & Richards, 2010). Fedoroff, Fedoroff, and Peever (2002) have suggested that these two goals do not need to be mutually exclusive and that by maintaining an individual’s safety while keeping them informed during each phase of treatment can be the greatest intervention toward a safer community. Furthermore, using a respectful approach where the patient feels safe and valued will likely build an alliance that will show the most promising change in regards to the problematic sexual behaviour (Saleh, Fedoroff, Ahmed, & Pinals, 2008). In this regard, clinicians may be able to moderate community risk by providing positive treatments instead of focusing on segregation and supervision. Ward and Connolly (2008) suggest that human rights relating to the core values of well-being and freedom for all people also apply to people with intellectual disabilities who have sexually offended. In order to support these core values, people with intellectual disabilities should be entitled to more intensive support if required. In addition, they should have the freedom to decide on the direction of their treatment because they are bearers of human rights and the denial of treatment should not be based on the measurement of the behaviour exhibited. It is important to highlight that individuals with disabilities have often endured infringements on their sexual rights (Richards et al., 2009) and that the convention seeks to protect these rights. In comparison to data collected on mainstream sex offenders, research is inconclusive, weak and often confusing (Griffiths, 2002; Lindsay, 2002; Sajith, Morgan & Clarke, 2008). Challenges arise when determining true prevalence among this population due to inconsistencies in reporting, vagueness in subject definitions, identification, poor collection of data, and false confessions (Craig, 2010; Simpson & Hogg, 2001). Although the research is inconclusive in

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determining prevalence among males with intellectual disabilities, Craig (2010) found that reconviction rates of sex offenders with intellectual disabilities was 6.8 times that of sex offenders without disabilities at two years and 3.5 times that at four years. Since it is known that treatment availability is generally lacking in the intellectually disabled group as compared to mainstream sex offenders (Barron, Hassiotis, & Banes, 2002; Courtney & Rose, 2004; Lindsay et al., 2002; Tsiouris, 2010), a comprehensive empirically-based therapeutic intervention could reduce the recidivism rates. Research has shown that people with intellectual disabilities are over represented in the criminal justice system with regards to sexually based offences (Courtney & Rose, 2004; Fedoroff & Richards, 2010; Griffiths, 2002) and that understanding issues such as prevalence, recidivism, and adopting a clear definition of problematic sexual behaviour will be important when deciding on and implementing effective therapeutic interventions. Other questions which need to be answered prior to making treatment recommendations include whether or not the individual is currently involved with the justice system, if they have a history of offending, if they have previously received treatment, and what supports are available to them, to name a few. For instance, if the person is before the courts with a current bail order of house arrest, the treatment direction is certainly going to be different than someone who has had an isolated incident that did not involve the legal system. It is therefore critical to consider all of the relevant matters that may be contributing factors to the problematic sexual behaviour as a means to ensure that one’s rights are not being violated during the process of possible hasty treatment decisions because a service provider is concerned about liability. Griffiths (2002) asserted that a diagnostic hypothesis can only be formulated if it has been based on a thorough individualized multimodal contextual assessment that has included both the biomedical and psychosocial factors that are representative of the whole person. It is not until a diagnostically based assessment has been completed and individual assessment results are available for clinical review that a treatment intervention should ever be considered. According to Lindsay and colleagues (2002), pharmacological and behavioural interventions seem to be the most common approaches

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while remaining the most comprehensive in treating sexual offending behaviour among individuals with intellectual disabilities. Among behavioural interventions, Haaven, Little and Petre-Miller (1990) have employed a combination of educational, behavioural plans and social skills training, while Griffiths, Quinsey, and Hingsburger (1989) developed a similar behavioural intervention that included education, training for social competence and relapse prevention. More recently, cognitive-behavioural treatments have been receiving the most recognition across all groups of both individuals with and without intellectual disabilities from a non-pharmacological perspective (Keeling & Rose, 2006; Lindsay et al., 2002; Murphy, Powell, Guzman, & Hays, 2007) and group cognitive behavioural treatment with social skills training appears to be the most effective therapeutic option (Barron, Hassiotis, & Banes, 2002). However, that is not to say that other treatments such as short-term trials of pharmacologic therapy should not be considered. Fedoroff and Richards (2010) discuss a full range of psychotropic medications available; however, they suggest caution as it is often the case that people in this population will arrive “on medication cocktails”, thus posing additional concerns related to side effects and the right to the most effective treatment (p. 456). According to Aman, Benson, Farmer, Hall, and Malone (2007), the benefits and risks of pharmacological treatments are often overlooked and disregarded along with appropriate monitoring of such risks not being made available to the individual with an intellectual disability or their substitute decision maker. Individuals with intellectual disabilities and their substitute decision makers have a right to know what treatment interventions are being recommended along with pertinent information in relation to the potential side effects. Antiandrogen medications are proposed as a means to alter or control the individual’s sexual urges, which can often be used to accompany cognitive behavioural therapy interventions (Fedoroff et al., 2002; Lindsay et al., 2002). However considerations need to be made regarding whether or not one’s normal sexuality and its expression is being suppressed as a convenience to those around the individual, or as a result of fear of legal implications towards the agency. Another concern is whether medication is being used as a means to contain the individual’s sexuality due to the lack of other less intrusive resources

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such as psychological interventions (Sajith et al., 2008). Worth noting is that although pharmacological treatment for mainstream sex offenders has a rather long-standing record, there is a lack of available evidence showing efficacy of pharmacological treatments with individuals with intellectual disabilities who have sexually offended (Lindsay et al., 2002; Sajith et al., 2008). In summary, Wheeler (2003) suggests that treatment decisions should be made based on the level of invasiveness, the balance of potential risks and benefits of the treatment while considering the dignity of the person during the treatment. These suggestions are generalizable to all forms of treatment beyond those for problematic sexual behaviours and offer a good platform for professionals when proposing treatment to anyone with an intellectual disability.

Autism Treatment Issues As Wheeler (2003) suggested, there are many factors to consider when making treatment decisions. Another example of the challenges faced by professionals, families, and people with intellectual disabilities professionals is exemplified by the issues surrounding the treatment of behaviours associated with autism. It is important to be aware that there are many treatments touted by professionals and the general population as effective when in fact they may be more harmful than helpful. The biggest issue regarding autism therapies may be the multitude of treatments available that lack empirical support and yet are still commonly utilized. Any online search of the terms “autism” and “treatment” reveals an extensive list of suggested options for autism therapy including auditory-integration, magnetic therapy, exorcism, irlen lenses, angel therapy, hyperbaric chambers, bionetics, bach flowers, stem-cell therapy, squeeze machines, packing, electroconvulsive shock, to name but a few (Todd, 2010). What these various treatments have in common is the fact that they are not empirically supported for the use with people with autism at this time. It is important to remember the human rights convention and to uphold the articles, in particular Article 7 which emphasizes the best interest of the child and Article 17 which addresses the need to protect the integrity of the person, as well as Article 15, which is the right to

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freedom from torture or cruel, inhumane or degrading treatment or punishment (United Nations, 2006). As an example, Facilitated Communication demonstrates how a treatment once publicized as a miracle break-through in communication for people with autism can run amok and result in harmful societal side-effects (American Psychological Association, 1994; Jacobson, Mulick & Schwartz, 1995; Perry & Condillac, 2003; Todd, 2010). Facilitated Communication is a method of intervention whereby a “facilitator” assists a person with autism (or other disabilities) to communicate by holding or touching them while they use some sort of communication device, often a computer keyboard, pictures, letters, or words on a board or touch screen (Perry & Condillac, 2003). The resultant communication with the individual was initially reported as miraculous. Throughout the early to mid-1990s, the popular media reported anecdotal stories of people with profound communication deficits typing complex passages of prose, or emotive messages to caregivers (Jacobson et al., 1995; Todd, 2010). However research has consistently demonstrated that it is the facilitators and not the person with a disability who unconsciously determine the subject of the communication (American Psychological Association, 1994; Jacobson et al., 1995; Perry & Condillac, 2003). The subsequent research into the validity of facilitated communication has fuelled many resolutions and policies at both the governmental and agency level that bar its use (American Academy of Pediatrics, 1998/2010; American Psychological Association, 1994; Perry & Condillac, 2003). Despite the widespread concerns regarding the validity of facilitated communication, people continue to endorse its use and it appears that many of the controversies revolve around the sense of false or misdirected hope whereby families, caregivers, facilitators and other believers want the reality of facilitated communication and therefore ignore the evidence against it (American Psychological Association, 2003; Todd, 2010). Examples of this ignorance abound in the popular media where there are various reports of miraculous communications where there was no expectation, such as with a patient in a coma, an individual with profound autism, or a terminally ill 3 month old infant (Todd, 2010). It is important to remember that when interventions are considered, it should be in support of the individual’s human rights and best interest and facilitated communication is not such an

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intervention, as it can be detrimental to the well-being of all those involved. Evidence has proven its ineffectiveness as a means of communication, and potential consequences of its use have been proven to be harmful to the individual and society at large (American Psychological Association, 1994, 2003; Jacobson et al., 1995; Perry & Condillac, 2003). The reported harmful consequences arise from the fact that the content of the messages is unconsciously directed by the facilitator and often results in false allegations of sexual or physical abuse by parents or staff which in turn causes significant emotional distress for all those involved (American Psychological Association, 1994; Jacobson et al., 1995; Perry & Condillac, 2003). These accusations have serious implications and have led to jail time, lengthy legal battles, social stigmatization, among other negative outcomes for parents, caregivers, and other individuals (Jacobson et al., 1995; Todd, 2010). In a recent case in the United States, a boy with Asperger’s was pulled from school and interrogated by police for over 2 hours without representation (guardian or protective services representative) and was falsely accused of being involved in the sexual assault of his sister based solely on the outcome of a session of facilitated communication (Dickerson, 2011). In this case the human rights of all family members were violated based on allegations made via facilitated communication. Charges against the parents were eventually dropped and following three months in separate foster homes, both children were returned to live with their family (Dickerson, 2011). The family has since been awarded $1.8 million dollars in a wrongful-arrest suit (Dickerson, 2011). This story highlights the issues at hand when considering evidence provided as a result of a “treatment” that is not proven reliable or effective. Had policy guidelines set by professional bodies (such as the American Academy of Pediatrics or the American Psychological Association) been followed, then the allegations of abuse as determined by facilitated communication would not have been sufficient to accuse a family of sexual abuse. We therefore have an obligation to ensure that the articles of the convention on the human rights of people with disabilities are upheld, by making certain that treatment options proposed to individuals and families are effective based on evidence and that the effects are not harmful to any of those involved. In order to support this goal there needs to be an emphasis

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on increasing the evidence-base for effective treatments, which will in turn require more involvement of people with intellectual disabilities as research participants.

Involving People Participants

with

Intellectual

Disabilities

as

Research

In order to support human rights by providing better treatment options, it will be necessary to include participants with intellectual disabilities in future research. This raises a final important consideration and specifically relates to Article 15, which emphasizes the importance of consent with regards to participation in medical or scientific research (United Nations, 2006). Iacono and Murray (2003) best summarize the challenges with regards to involvement and consent of people with intellectual disabilities as “a need to protect potentially vulnerable participant groups, while ensuring that demands placed on researchers are not so restrictive as to preclude valuable research” (p. 49). The result is that researchers may either exclude individuals with disabilities or may not secure appropriately informed consent (Cameron & Murphy, 2006). It may be for these reasons that there is currently a paucity of person informed research, yet it is important to remember that people with intellectual disabilities have the same rights as other members of society in regard to participating in research. Central to the process of inclusive research is the importance of consent and with people with intellectual disabilities this was often seen as a complex task better avoided. It has also been suggested that by omitting a specific population, such as those with limited verbal communication skills, results may be skewed (Cameron & Murphy, 2006). The right to give informed consent has too often been disregarded alongside untenable assumptions about an absence of capacity. The second half of the last century has seen a dramatic increase in the amount of research in the area of disabilities; however, until more recently the emphasis has been about people with disabilities, rather than with them. Bray (1998) says "...[w]e must ensure that research is undertaken for a clear purpose - to directly or indirectly improve the lives of people with disabilities... We must undertake research in consultation and collaboration with people with disabilities

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themselves. We must also take responsibility to ensure our research does influence change in a positive and timely manner" (p. 2). The well-being of the person must take precedence over the need for the research. There is still some reluctance to undertake research with people with intellectual disabilities. Two key reasons for this are the numerous communication difficulties that present themselves by the very nature of the disability and the erroneous assumption that individuals do not have the capacity to understand and are therefore unable to provide informed consent. People with intellectual disabilities are at risk of not receiving adequate information about the research in order to make an informed decision or of being very easily coerced into participating (Bray, 1998). There are at times issues regarding capacity for consent, often compounded by an absence of an advocate to ensure ethical consent gathering and participation. There is a risk for exploitation and abuse which is in direct violation of Article 16 of the convention (United Nations, 2006). Therefore the decision to undertake participatory research must not be taken lightly and rigorous ethical safeguards must be put in place (Dalton & McVilly, 2004). Nonetheless, the starting point must be that the person has the same rights as all other people in regard to choosing whether or not they wish to participate in research; they may just need support to exercise their rights. The first assumption should always be that the person has capacity to consent. What is important is that all information and documents are provided at the appropriate level for each person to understand. It is then up to the researchers to ensure the reason for the research and the processes around gaining consent are ethical and legal. The Council for International Organizations of Medical Sciences (2002) provide three fundamental ethical principles that must be applied when planning research involving people with disabilities. 1. Respect for persons, including their autonomy and right to selfdetermination; 2. Beneficence for participants and the community, that is maximizing benefits and minimizing risks; and

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3. Justice, both legally and morally in the treatment of those involved in research and in the treatment of the communities in which the participants belong. The Nuffield Council on Bioethics (2002), in talking of multicenter research, endorse these principles with their statements around the duty to show respect for persons, to be sensitive to cultural difference and not exploiting the vulnerable. The design of the research should be appropriate and of significance to the person and participants must be protected from exploitation or abuse, and undue risks. These principles are all in line with the convention, in particular Articles 7, 15, 16 and 17 (United Nations, 2006), which have been previously mentioned throughout this chapter. Research design becomes critical when considering competence or capacity to consent. Research requiring a person with an intellectual disability to participate in a clinical trial of drugs may not be appropriate, but they may be competent to consent to be interviewed regarding their experiences of a health care event. A person with an intellectual disability has the right to receive information that he or she can understand, and which takes account of his or her individual circumstances, such as level of understanding, reading ability, and knowledge about research and research requirements. With increased participation in research, the rights of people with intellectual disabilities can be better supported.

RIGHTS AGENDA Taking into account the available literature and the recent ratification of the United Nations Declaration on the Rights of Persons with Disabilities, there is evidence to show that the individual with intellectual disabilities is central to the decision-making process. First and foremost, the person who is receiving the treatment should be provided with every opportunity to understand, absorb, consider, ask questions, and come to a decision of whether or not they choose to consent to a treatment. Although Cea and Fisher (2003) found that their participants with intellectual disabilities might not have

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understood all components when dealing with health-related treatments, a high proportion of participants offered partially adequate responses, meaning they understood some of the information. This partial understanding suggests that educational techniques about treatments and consent could improve the ability of individuals with disabilities to consent (Cea & Fisher, 2003). Moreover, the importance of speaking to the person in a language they understand is essential to whether or not they are able to consent and weigh the risks and benefits of a proposed treatment (Fedoroff et al., 2002). Some people with intellectual disabilities may have specific difficulties relevant to informed consent, including a reduced vocabulary and understanding of abstract words and ideas; shorter attention spans and reduced short-term memory capacity; limited abstraction skills (i.e., concrete and literal understanding of questions and situations); a reluctance to rarely say they do not understand unless directly asked; difficulty following long, run-on sentences; and difficulty answering time-related questions. Consequently, adequate time must be allowed for the process of obtaining informed consent. Below are some strategies to use during the consent gathering process: • Speak slowly and clearly in a quiet location with minimal interruptions • Introduce concepts one point at a time • Ensure a written copy of key points (maybe use a favourite colour) • Examine other ways of providing information if written media does not work (e.g., audio/video or pictorial) • Use diagrams and flowcharts • Ask the individual to repeat back (paraphrase) if possible to confirm their understanding These strategies should be repeated following every data collection activity or phase of research or following each new treatment implementation. In addition, questions should be asked at the end of the process of both the individual and the professional in order to assure that consent and understanding are fostered. These questions include (but are not limited to): • Have I provided all the relevant information?

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• Could I present information in a way that is easier to understand e.g., visual aids, or with simpler language? • Have I fully explored all the different methods of communication? • Did I ensure the right support people were available who can confirm the person understood to minimize coercion? • Have I explained all the risks and benefits? • Did I allow enough time for questions? • Have I documented the consent process thoroughly? Furthermore, when choosing treatments whether it is for research or to address a health need or problematic behaviour it is important to remember that all treatments are not equal. Each treatment is associated with risks, benefits, and anticipated effectiveness. The following guidelines are intended to direct appropriate treatment selection and implementation monitoring for professionals, caregivers, and individuals with intellectual disabilities when employing a new treatment (Condillac, 2010, April). A treatment is ultimately any strategy that alters a health condition, behaviour or response, or teaches a skill and is commonly experienced by any individual who lives with the support of others, regardless of disability. Despite best intentions, the strategies undertaken are not always informed by evidence, or morality, and may be unintentionally harmful as we have previously discussed regarding facilitated communication. Although commonly not considered a formal treatment, strategies are associated with specific risks and benefits and should not be implemented without consideration of their potential impact. The first consideration is whether or not the treatment is recommended by qualified professionals (Condillac, 2010, April). It is important to critically review the source of a specific treatment suggestion and best practice is to emphasize interventions that are academic and peer-reviewed in nature, and to avoid those that are only touted by the popular media (and not by mainstream professionals) or found in books that are published by the author or a special interest group without the sponsorship of a professional organization (i.e., the American Psychological Association does not endorse the use of facilitated communication). Therefore when a treatment is suggested, the first thing to consider is whether or not

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the person making the recommendation is a qualified professional and is knowledgeable about the risks and benefits of the proposed treatment. If the person who suggests the treatment is qualified to recommend it, it is also important to ask why the treatment applies to the individual (Condillac, 2010, April). Other questions that need to be asked of the person making the intervention recommendation include (but are not limited to): what results or changes would result by consenting or refusing the treatment; what is the cost of time, energy, or money; what are the expected effects and side effects; has anyone previously found this ineffective or harmful; and how or when will you know if the treatment is working or not? These questions will aide in assessing whether or not the suggested strategy, treatment, or intervention should be implemented. If the answers to these questions are satisfactory and a choice is made to implement a specific treatment, it is necessary to proceed in a manner that allows for critical monitoring. At this stage it is important to emphasize the need to have a clear written plan of treatment, to have a clear target for change, and to monitor progress (if applicable), effects, and side effects (Condillac, 2010, April). Once implemented, regular treatment reviews should be arranged and future decisions should be based on empirical evidence (e.g., data tracking, assessments, etc.). Taking a systemic approach based on consistency and review is imperative from the planning stage to implementation, review and end of treatment (if applicable), as it ensures a treatment is executed correctly. For example, Prater and Zylstra (2006) caution against the use of psychotropic medication (especially for new challenging behaviours) until all potential medical/environmental causes are excluded. A systemic approach also allows for the consideration of limitations, as monitoring in this manner establishes a baseline against which change can be measured and future informed decisions can be made and the treatment may be stopped if deemed not effective. Below is a table that summarizes some of the responsibilities needed in order to support the human rights of people with disabilities and includes recommendations and concerns for the individual, the professional, the advocate (which may include family and/or support staff) and the overseeing service provider or agency. While it is

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extremely important that the individual remains a central figure in any treatment decision, it is also important to involve the people that the individual trusts including family members or support staff. (Fedoroff et al., 2002; Fedoroff & Richards, 2010), as this involvement will play a role in both the consent process and the success of the treatment. The chart below stresses the importance of a transdisciplinary team. Members of the transdisciplinary team share knowledge, skills, and responsibilities across traditional disciplinary boundaries in assessment and service planning (Dyer, 2003). As an evolution of multidisciplinary and interdisciplinary teams, the transdisciplinary team involves a certain amount of boundary blurring between disciplines and implies cross-training and flexibility in accomplishing tasks (Dyer, 2003).

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Table 1: Roles and Responsibilities in Facilitating Consent to Treatment Individual Requiring Support

Advocate (family and/or support staff)

Clinician

Service Provider

Training in human rights and the convention

Training in human rights and the convention

Training in human rights and the convention

Obligation to provide ongoing training to individuals with disabilities on human rights, including consenting to treatment

Training in a range of treatments both pharma- and nonpharmacologic

Be an advocate – if you think they don’t understand – ask them so that it can be explained further

Maintain current understanding in biopsychosocial treatment models, and an ability to conduct comprehensive assessments

Obligation to provide training to staff in human rights, which involves issues of consenting to treatment

Training in patient rights including consenting to treatment

As a support staff be a liaison with family, the individual, and other professionals (doctors, /clinicians, researchers)

Use best-practice in regards to diagnosing, research and treatment planning.

Obligation to ensure that treatments provide positive contributions to the quality of life for individual

Training in selfadvocacy and how to ask questions when clarification is needed

Ensure that training in human rights, consent, sexuality and other treatments, is followed through with the individual and that the training was accessible to their language and learning needs

Fully explain all treatment options to the individual and any advocates –ensure that risks, benefits, alternatives, and possible complications if treatment is refused are disclosed

Obligation to ensure that individuals with problematic sexual behaviours understand their right to treatment options

Training in selfadvocacy and how to direct and choose one’s own quality of life

Support the individual in their treatment decisions and ensure that the process is understood –and explain further when necessary

Advocate for the individual and work to facilitate and ensure their right to consent to and withdrawal from treatment

Obligation to ensure that individuals gets optimum care that is the least intrusive, does not cause harm and respects their dignity

Training in selfadvocacy, sexual and reproductive rights

Support individual to make their own decisions regarding reproductive rights and menstrual management

Work collaboratively with all parties to ensure that the individual is the decision maker and that there is no coercion

Obligation to provide training to both staff and individuals with disabilities regarding sexuality and reproductive rights

Training in rights related to selfdetermination

Speak using language or other nonverbal means that the individual best comprehends

Identify family members, advocates, or professionals who could help you if you feel your rights are being violated

Follow-up and maintain on-going communication, and appointments to ensure continuity and establish the circle of care

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In addition, there are risks associated with trying treatments that are not recommended by a professional. Commonly front-line staff that directly support individuals with disabilities make suggestions related to treatment or propose strategies that may aide them in supporting their client (Condillac, 2010, April). As a result, procedures are needed to handle these staff suggestions and caution is required before anything new is implemented regardless of the superficial harmlessness of a proposed strategy. The following are some suggested guidelines to follow when a front-line staff member proposes a new strategy, treatment, or intervention: Table 2: Guidelines for the Implementation of New Treatments

Initial treatment/strategy idea and proposal

Treatment proposal review

1. Discuss the idea with a manager or clinical consultant. 2. If approved for review, the staff member completes a standardized written report which includes: information about the treatment or strategy, relevant background research, what are the expected effects and side effects, has anyone previously found it to be ineffective or harmful, what are the associated risks and benefits specific to the individual (e.g., medication interactions), their family, or others it may impact (other staff members or house-mates), how will you know if the treatment is working or not, how will it be monitored and reviewed, and when will it be terminated. 3. The completed report is presented to a 3-person committee including someone who is in charge (i.e., a manager), someone who has clinical expertise, and someone who is impartial or can give advice specific to the treatment (e.g., a nurse, speech/language pathologist or nutritionist). 4. If the review committee agrees that the treatment or strategy is plausible and potentially beneficial then it is provided to the senior residential manager, director, or clinical supervisor for evaluation. 5. If their final decision is yes, then a written proposal and implementation plan is prepared and presented to either the individual and/or the substitute decision maker for discussion and in order to obtain consent. 6. The final decision rests solely with the individual and/or their consent provider.

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Implementation and evaluation

7. The treatment or strategy is implemented following consent, evaluated and monitored according to the treatment plan. This stage is imperative in order to assess the effectiveness and to inform future decisions regarding treatment/strategy whether or not it is continued or discontinued and to address if it will be used in the future. 8. If the treatment/strategy is deemed effective, then a small case study may lead to larger scale research or implementation. If this is the case then the more documentation and careful monitoring of implementation and evaluation provided throughout this process, the better and more generalizable the results may be.

When addressing the treatment of problematic sexual behaviour in particular, sophisticated treatment programs for offenders with disabilities have been developed, with success rates equal or better than programs for the general offender population (Fedoroff & Richards, 2010). Treatment programs that fail to account for learning difficulties are less likely to be effective. Success in providing treatment requires vigilance and patience on the part of the clinician to ensure that the individual is provided with the opportunity to participate in selecting from a full range of treatment options, including both pharmacologic and non-pharmacologic ones. Effective programs must also ensure that individuals with disabilities are informed of the risks and benefits of accepting or rejecting treatment. This informed consent may take the form of a review and repetition of the treatment plan, and support from care providers to ensure information is being relayed accurately and understood. Treatment ultimately rests with the patient not only because it is a human right, but also because inclusion of the patient in the process increases the likelihood of a successful outcome (Fedoroff et al., 2002). Any treatment that is being recommended should have the ultimate goal and emphasis of planning for and preparing for the individual for inclusion in the community (Haaven et al., 1990). Human rights can serve as a guide in constructing a framework for treatment, as well as to inform the individual of their inherent dignity and value (Ward & Connolly, 2008). With optimism, Ward and Connolly (2008) articulated that the significant implications that a human rights perspective can have on the treatment of individuals with an initiative, ensuring that “assessment, treatment and monitoring models underpinning practice are consistent with the core human rights values of freedom and

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wellbeing” (p. 96). With the newly ratified Convention on the Rights of Persons with Disabilities (United Nations, 2006), therapeutic practice with and for individuals with intellectual disabilities can be established using a rights-based framework that promotes evidence-based treatment options both pharmaceutical and non-pharmaceutical, with an emphasis on the freedom to choose that endorses the principles of just and fair consenting processes.

Research Recommendations The primary goal of research should be to uphold the human rights of their participants, in particular by promoting an individual’s right to respect, autonomy and self-determination. An inherent responsibility of researchers is to ensure maximum benefits while minimizing harm, this responsibility is augmented when conducting research on vulnerable populations. One way to support this responsibility is to ensure that all those conducting research with people with intellectual disabilities are knowledgeable and competent to do so and are being supervised by the appropriate specialists. Research methods employed should be appropriate to the population and should be cautious of issues related to possible coercion when recruiting participation. It is important to consider including the presence of a consumer advocate, family member, or designated professional who can act as an advocate and ensure that the participant feels comfortable declining to participate or withdrawing from research. This recommendation is in line with Article 15, whereby no one shall be subjected to medical or scientific experimentation without their free (and informed) consent (United Nations, 2006). In addition, when developing information and consent forms for use in research, it is valuable to include people with intellectual disabilities. Whenever possible, information sheets and consent forms should be trialled with a group of people who are similar to potential study participants and checking back with them after each data gathering activity to ensure that the principles of the human rights convention are being upheld.

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CONCLUSION In summary, people have the right to consent to effective and nonharmful treatment and therefore caution is needed when considering any course of action regardless of apparent legitimacy. There is a need for all parties (from the professional making the recommendation, to the front-line staff member, to the caregivers and family members of the individual) to be aware and be wary of any recommended treatment and to assume responsibility for its monitoring, review, follow-up and evaluation. Whether or not the strategy is considered a clear intervention, any change that impacts health, mental health, behaviour, or teaches a skill are still regarded as treatments and must be implemented with vigilance and scrutiny. In addition, this systemic approach to implementation allows for generalization through the development and evaluation of new approaches within a safe framework and allows for the dissemination of practical knowledge and interventions. As we have reviewed here, the right to consent ultimately facilitates the right to self-determination for people with intellectual disabilities and is a shared responsibility of professionals, advocates, family members, and individuals. The Articles of the Human Rights Convention provide a framework when proposing new treatments and need to be considered prior to their implementation. Some treatments are in obvious and direct violation of the convention, such as sterilization and the Ashley treatment, while other treatments challenge the convention more subtly, such as withholding treatment or using medication for problematic sexual behaviours, or offering harmful treatments such as facilitated communication. It is vital to continue research with people with intellectual disabilities in order to provide better treatment and deepen our understanding. By keeping the human rights convention at the forefront of professional activities we can work towards a climate where people with intellectual disabilities are supported in their human rights and are able to determine their own future.

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Carlson, G., Taylor, M., & Wilson, J. (2000). Sterilisation, drugs which suppress sexual drive, and young men who have intellectual disability. Journal of Intellectual and Developmental Disability, 25(2), 91-104. Cea, C. D., & Fisher, C. B. (2003). Health care decision making by adults with mental retardation. Mental Retardation, 41(2), 7887. Condillac, R. (2010, April). Practical guidelines: Integrating good practice in our daily lives. In R. Condillac (Chair). The right to effective treatment for people with developmental disabilities: Some practical guidelines for real-world settings. Symposium conducted at the Human Rights and Persons with Intellectual Disabilities Conference, Niagara Falls, ON. Council for International Organizations of Medical Sciences. (2002). International ethical guidelines for biomedical research involving human subjects. Retrieved from http://www.cioms.ch/publications/layout_guide2002.pdf Courtney, J., & Rose, J. (2004). The effectiveness of treatment for male sex offenders with learning disabilities: A review of the literature. Journal of Sexual Aggression, 10, 215–236. Craig, L. A. (2010). Controversies in assessing risk and deviancy in sex offenders with intellectual disabilities. Psychology, Crime & Law, 16(1-2), 75-101. Dalton, A. J., & McVilly, K. R. (2004). Ethics guidelines for international, multicenter research Involving people with intellectual disabilities. Journal of Policy and Practice in Intellectual Disabilities, 1(2), 57-70. Dickerson, B. (2011, January 11). Watch police video of 13-year-old boy’s interrogation. Detroit Free Press. Retrieved from http://www.freep.com/article/20110111/NEWS03/301120002/ Watch-police-video-13-year-old-boy-s-interrogation Diekema, D. S. (2003). Involuntary sterilization of persons with mental retardation: An ethical analysis. Mental Retardation and Developmental Disabilities Research Reviews, 9, 21-26.

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