"Forwards, Not Backwards": How the U.S. Supreme Court May Save the Plight of Individuals with Mental Disabilities.

When federal district court Judge Carlton Reeves penned his opinion in U.S. v. Mississippi,1 the case that seemed poised to overhaul Mississippi's suffering mental health system, he began with the story of Ms. Melanie Worsham, a mental health patient, also a certified peer support specialist. Ms. Worsham works to help those like herself who suffer with lifelong serious mental illness (SMI) to "overcome the obstacles that might be getting in their way of living the life they want to live." She also assists those with SMI by aiding in "navigating the system, to find resources, and then just being moral support."2.

Psychologists' perspectives on supported decision making in Ireland.

BACKGROUND: A new legal capacity act was introduced in Ireland in 2015. This study aimed to identify and critically examine key issues in the area of decision-making capacity from the perspective of psychologists working with adults with an intellectual disability. METHODS: A qualitative exploratory approach was employed, and the study was positioned in a social constructionist framework. Purposive and snowballing sampling methods were used to recruit 15 clinical psychologists working with adults with an intellectual disability. Data were collected with the use of individual semistructured interviews. Interview transcripts were analysed using a model of thematic analysis. RESULTS: Six themes were identified: (1) a presumption of capacity but a culture of incapacity, (2) supporting decision making as a process, (3) authenticity of decision making, (4) need for support and training, (5) contributions of psychology and (6) the way forward. CONCLUSIONS: Participants described that people with intellectual disabilities were often excluded from decision-making processes. They welcomed the functional approach to decision making, considered substituted decision making to be necessary within a support framework and described supporting decision making as a process. Systemic, resource and attitudinal challenges were identified.

Intellectual disability and independent living: Professionals' views via a Delphi study.

BACKGROUND: The Convention on the Rights of Persons with Disabilities (2006) states that people have the right to decide where to live and with whom. Professionals play a key role in supporting processes for independent living (IL). This research aimed to identify which ideas generated more or less consensus among professionals regarding the role of different agents involved in the processes of IL in Spain. METHOD: The Delphi method was applied to an expert panel of 25 professionals. RESULTS: A high consensus was reached regarding the role that people with intellectual disabilities, their families and their natural support networks play in supporting IL processes, but there was less consensus on the role played by organizations and professionals. CONCLUSIONS: The study highlights the need to promote practices that favour the decision-making capacity of individuals to move towards models of support based on community and the human rights model.

Chemical restraint of adults with intellectual disability and challenging behaviour in Queensland, Australia: Views of statutory decision makers.

BACKGROUND: Psychotropic medication is widely prescribed to treat mental illness. However, it is controversial when used as a chemical restraint (CR) to manage challenging behaviours (CBs) of adults with intellectual disability (ID). CR has potentially negative consequences and affects human rights. METHOD: Qualitative research conducted between 2014 and 2015 explored the views of 'guardian' decision makers appointed under unique Queensland legislation oversighting the use of CR. RESULTS: Findings included (1) negative conceptualization of CR, (2) concerning relationships with prescribers and disability sector staff, (3) challenges to information seeking about people with ID prescribed CR and (4) problematic implementation of positive behaviour support plans. CONCLUSION: According to guardians, CR may be used in lieu of community supports, and prescribers sometimes diagnose mental illness to avoid CR legislative requirements. Guardians, prescribers and professionals would benefit from training that addresses the intersection between physical and mental health, CB and CR.

Re: AB (Termination of Pregnancy) [2019] EWCA CIV 1215: 'Wishes and Feelings' Under the Mental Capacity Act 2005.

In Re: AB (Termination of Pregnancy), the Court of Appeal was asked to consider an assumption made about the future living arrangements of a pregnant patient, and the weight to be ascribed to her wishes and feelings when she had no real understanding of her predicament. This commentary explores the importance of taking into account the perspective of the patient, even if suffering from a mental disorder, and it will analyse the existing common law to show that the weaker the ability of the patient to form her own wishes and feelings, the more appropriate it would be to rely on the remaining evidence.

'Transformed rights' sexual health programme evaluation for the parents and service workers of adults with an intellectual disability.

BACKGROUND: To promote sexual health in adults with an intellectual disability (ID) in Taiwan, sexual health programmes were provided to adults with ID, their parents and service workers. This study evaluates the impact of these programmes that involved the parents and service workers. METHODS: Intervention and participatory research paradigms were applied to develop, implement and evaluate programmes that address the challenges that relate to the sexual rights of adults with ID. Additionally, the programmes fostered open dialogue among the participants concerning the sexual health of people with ID. In total, 57 parents and 164 service workers were involved in the programmes. A quasi-experimental design and standardised questionnaires (Attitudes to Sexuality Questionnaire - Individuals with an Intellectual Disability), as well as in-depth interviews, were used to collect both quantitative and qualitative data on the programmes' effectiveness and participants' experiences between April 2012 and July 2015. RESULTS: The findings revealed that after the programmes were implemented, attitudes towards the sexual rights of people with ID were significantly more positive among both the parents and service workers. Participation in the sexual health programmes facilitated constructive dialogue by revealing hidden concerns and by transforming the perspectives of the parents and service workers from viewing sexuality as a social problem to understanding the sexual rights of adults with ID. CONCLUSIONS: Both the quantitative and qualitative results demonstrate that the programmes had a positive impact on the parents and service workers in terms of their attitudes towards the sexual rights of people with ID. Open dialogue and reciprocal interaction strategies caused transformations in the perspectives of parents and service workers on sexual health.

Sterilization of those with intellectual disability: Evolution from non-consensual interventions to strict safeguards.

Non-consensual sterilization is one of the characteristic historical abuses that took place mainly in the first half of the 20th century. People with intellectual disability (ID) were a prime target as part of the ideology of negative eugenics. In certain jurisdictions, laws were in force for several decades that permitted sterilization without the need for consent or with consent from third parties. The long-term adverse effects on those sterilized against their will have only more recently been recognized. In the latter half of the 20th century, human rights treaties were introduced and developed; they have, in the main, curbed sterilization abuses. Courts have developed more stringent criteria for making decisions on applications for sterilization, and nowadays there are mostly adequate safeguards in place to protect those with ID from non-consensual sterilization. The only exception should be the particular case in which, all medical and social factors having been taken into account, sterilization is overwhelmingly thought to be the right decision for the individual unable to give consent.

'Cautiously optimistic': Older parent-carers of adults with intellectual disabilities - Responses to the Care Act 2014.

This article discusses potential opportunities for best practice in the United Kingdom that may be brought about by the Care Act (2014). Carers in the United Kingdom were given new rights within this legislation with a focus on needs led assessment. The underpinning philosophy of the Care Act is to streamline the previous legislation and offers a framework for carers and people in receipt of care, to enable a more personalized approach to care and support. Offering a discussion of likely opportunities brought about by provisions of the Care Act, this article draws on a small study involving older parent/carers of sons or daughters with intellectual disabilities. Exploring the extent to which such parents of adults with intellectual disabilities were aware of the details of this legislation and the potential impact it may have on their lives highlighted other significant areas, some of which are discussed below. Semi-structured interviews were conducted with five parents over the age of 60 of sons or daughters with intellectual disabilities in North West England. The study adds to the body of knowledge and understanding about parents of adults with intellectual disabilities and explores and provides a deeper understanding of parents' experiences of the implementation of this specific piece of legislation and their perception of the relevance of it to themselves. Findings include some awareness of the legislation and some feelings of optimism about its likely implications, although participants appeared less clear about the specificities and the impact of these upon them and/or their sons or daughters. Findings from the semi-structured interviews also showed parent's articulation of the extent of reciprocal care manifest between them and their son or daughter with an intellectual disability, as well as an awareness of the fragility of their own emotional well-being.

The exercise of human rights and citizenship by older adults with an intellectual disability in Ireland.

BACKGROUND: The UN Convention on the Rights of Persons with Disabilities (CRPD) provides the benchmark for assessing human rights and citizenship for people with disabilities. This emphasises autonomy, choice, independence, equality and participation for individuals as its fundamental guiding principles. METHODS: This paper explores the exercise of human rights and citizenship for older adults with intellectual disabilities (ID) in Ireland, including choice-making, advocacy and political participation. Cross-sectional data (n = 701) is drawn from wave 2 of the Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing. Rates of participation are reported, along with bivariate associations across a range of demographic, personal and social variables, while factors associated with level of choice-making and voting are explored. RESULTS: We found very low rates of choice-making, advocacy and political participation amongst this population. Two factors of choice were explored: key life choice and everyday choice. Some commonalities were identified between the two factors, yet key differences were also noted. Type of residence was the strongest predictor of key life choice yet not significant in everyday choice, while the reverse was true for functioning in activities of daily living. Other factors were also significant in determining choice, including level of ID, contact with family, functional limitation, literacy, age, having friends and respondent type. CONCLUSIONS: Low rates of participation reported here impinge on the rights of older adults with ID under the principles of the UN CRPD. Choice-making emerged as a multi-factorial phenomenon, with different factors important depending on the type of choice involved. This encourages a nuanced and personalised response from policy and support services to overcome individual challenges to participation as equal citizens. The significance of respondent type also highlights the difficulty of including self-report, supported and proxy participants in ID research.

Severity of cognitive disability and mental health court determinations about fitness to stand trial.

BACKGROUND: Little is known about the socio-demographic, clinical and legal determinants of mental health court decisions of unsoundness of mind and unfitness to stand trial for people with cognitive disability. We aimed to estimate the association between severity of cognitive disability and mental health court determinations of unsoundness or unfitness and describe the socio-demographic, clinical and legal factors that predict these determinations. METHODS: Case file data were extracted on 92 individuals who had a criminal case referred to the Queensland Mental Health Court between 1 January 2013 and 31 December 2014 due to cognitive disability. We fit a modified multivariable Poisson regression model to estimate the association between severity of cognitive impairment and mental health court determination, controlling for socio-demographic, clinical and legal factors. RESULTS: Adjusting for covariate effects, severity of cognitive impairment was positively associated with being found unfit to stand trial (adjusted prevalence risk ratio = 1.57; 95% confidence interval: 1.07, 2.33; P = 0.023), and comorbid psychotic disorder predicted an increased risk of being found unsound of mind at the time of offence (adjusted prevalence risk ratio = 3.63; 95% confidence interval: 1.38, 9.54; P = 0.009) by the Queensland Mental Health Court. CONCLUSIONS: Severity of cognitive disability is associated with determinations of unfitness but does not predict determinations of unsoundness in the Queensland Mental Health Court. Psychiatric assessments of cognitive impairment play a pivotal role in mental health court determinations for people with cognitive disability.

Suffrage for People with Intellectual Disabilities and Mental Illness: Observations on a Civic Controversy.

Most electoral democracies, including forty-three states in the United States, deny people the right to vote on the basis of intellectual disability or mental illness. Scholars in several fields have addressed these disenfranchisements, including legal scholars who analyze their validity under U.S. constitutional law and international-human-rights law, philosophers and political scientists who analyze their validity under democratic theory, and mental-health researchers who analyze their relationship to scientific categories. This Note reviews the current state of the debate across these fields and makes three contentions: (a) pragmatic political considerations have blurred the distinction between disenfranchisement provisions based on cognitive capacity and those based on personal status; (b) proposals that advocate voting by proxy trivialize the broad civic purpose of the franchise; and (c) the persistence of disenfranchisement on the basis of mental illness inevitably contributes to silencing socially disfavored views and lifestyles. Accordingly, the Note cautions reformers against advocating for capacity assessment or proxy voting, and emphasizes the importance of disassociating the idea of mental illness from voting capacity.

[The Evaluation of the German Federal Law of Equal Treatment of Disabled Persons]. / Die Evaluation des Behindertengleichstellungsgesetzes Rechtliche Aussagen und empirische Ergebnisse zur Barrierefreiheit im Bereich der gesetzlichen Krankenkassen.

The German federal law of equal treatment of disabled persons (Behindertengleichstellungsgesetz des Bundes, BGG) came into effect in 2002. An evaluation of this law was required by the national plan of action for the implementation of the United Nations Convention on the Rights of Persons with Disabilities (CRPD). Project evaluation objectives were to estimate whether the needs of disabled persons were being met and whether the instruments proved to be adequate for fulfilling the aims of the law. Jurisprudential analyses in combination with surveys were used for this research. It was found that the BGG still lacks adequate publicity. Its impact, however, was assessed as positive. Results also indicate that there might be some shortcomings with regard to accessibility. For a closer examination, however, more data focusing on accessibility in the context of health care and rehabilitation is.

[Decision making and consents given by demented patients. Are they valid?] / ¿Sé y puedo? Toma de decisión y consentimiento informado en los trastornos demenciantes: dilemas diagnósticos y jurídicos en Chile.

In Chile, more than 180 thousand people (1% of the population) have some form of dementia. The figure should increase to approximately 600,000 (3% of Chileans) by 2050. This disease poses major challenges to the society. One of them is the effective recognition of the autonomy and responsibility of the person living with this condition. This article aims to review the clinical assessment of competence, its agreement with the Chilean legal system and the challenges that the assessment of competence poses in clinical decision-making and the capacity of an individual make decisions, according to the new international obligations subscribed by Chile. It is concluded that inclusion is a pending challenge, reflected among other things, by the non-compliance with binding rules such as Article 12 of the Convention on the Rights of Persons with Disabilities, which affirms that persons with disabilities have the right to be recognized as a person everywhere, before the law.

P.S. for post-Soviet: A glimpse to a life of persons with intellectual disabilities.

This article focuses on the situation of persons with intellectual disabilities in the developing post-Soviet countries and aims to review the extent to which services offered to them promote values of the Convention on the Rights of Persons with Disabilities and empower these persons to lead fulfilling lives. Interviews with experts revealed that post-Soviet countries form a peculiar cluster among other developing countries, which has specific attributes. First of all, there prevails a strong stigmatization, which consequently leads to the predominant silent mandate to isolate those with intellectual disabilities in big residential care institutions. Second, the governments' lack political will to start the reforms and initiatives of nongovernmental organizations which they do not sustain (or, assumingly, are even suppressed). As a result, persons with intellectual disabilities find themselves stuck between the Soviet tradition of exclusion and simulated superficial reforms.

Legal protection of the right to work and employment for persons with mental health problems: a review of legislation across the world.

The right to work and employment is indispensable for social integration of persons with mental health problems. This study examined whether existing laws pose structural barriers in the realization of right to work and employment of persons with mental health problems across the world. It reviewed disability-specific, human rights legislation, and labour laws of all UN Member States in the context of Article 27 of the UN Convention on the Rights of Persons with Disabilities (CRPD). It wes found that laws in 62% of countries explicitly mention mental disability/impairment/illness in the definition of disability. In 64% of countries, laws prohibit discrimination against persons with mental health during recruitment; in one-third of countries laws prohibit discontinuation of employment. More than half (56%) the countries have laws in place which offer access to reasonable accommodation in the workplace. In 59% of countries laws promote employment of persons with mental health problems through different affirmative actions. Nearly 50 years after the adoption of the International Covenant on Economic, Social, and Cultural Rights and 10 years after the adoption of CRPD by the UN General Assembly, legal discrimination against persons with mental health problems continues to exist globally. Countries and policy-makers need to implement legislative measures to ensure non-discrimination of persons with mental health problems during employment.

The changing face of autism in Brazil.

At the end of 2012, after intensive lobbying by parent activist associations, a federal law recognized autism as a "disability for all legal purposes" in Brazil. Defining autism as a disability was more than a change of legal status to guarantee social benefits. It was also a political maneuver, orchestrated by parent associations, aimed to take the responsibility for treatment away from the public mental health network of services. This article examines the controversies that have set parent associations in direct antagonism with mental health professionals in the public health system. We draw from ethnographic data and theoretical discussions in the field of disability studies to situate these controversies within the context of a larger debate on the relationship between health, rights, and citizenship. We found similarities between the ethical and political goals of parent activists and mental health professionals in Brazil, but we argue that the main cause of dissent is the role that each of these social actors assigns to identity politics in their clinical and political projects.

SUPPORT FOR THE EXERCISE OF LEGAL CAPACITY: THE ROLE OF THE LAW.

In 2014, the Australian Law Reform Commission released a report dealing with recognition before the law and legal capacity of people with disability. The report recommended that "supported decision-making" should be introduced into relevant Commonwealth laws and legal frameworks. This column explores what is meant by "support" to exercise legal capacity and what role the law may play in attempting to move beyond the traditional substituted decision-making model for those with mental and intellectual impairments.

Re-visiting Re X: hysterectomy, removal of reproductive capacity and the severely intellectually disabled child in New Zealand.

The law governing parental consent to any surgery performed on an intellectu- ally disabled minor that results, directly or indirectly, in the loss of reproductive capacity was first considered in New Zealand in the High Court case of Re X in 1991. The decision was remarkable in several respects, not least because it reflected a genuine attempt to obtain a representation of interests beyond those of the particular child and parents involved. However, legal and socio-political developments in the intervening years, both locally and internationally, suggest that a review of the decision is timely. This article questions whether, in light of these events, Re X should be revisited and concludes by suggesting a possible legal response.

The struggle for web eQuality by persons with cognitive disabilities.

This article is based on the book eQuality: The Struggle for Web Accessibility by Persons with Cognitive Disabilities (2014, Cambridge University Press). It contends that the rights of individuals with cognitive disabilities to equal access to web content are not only protected under law, but may also be implemented and supported by current user-based, semantic and cloud technologies. Consistent with the Americans with Disabilities Act and the U.N. Convention on the Rights of Persons with Disabilities, web content equality is defined through functional, rather than disability-specific, approaches and techniques to enable personalization and customized usage across online functions. Legal challenges brought forward by individuals with cognitive and other disabilities illustrate the barriers still faced by individuals with disabilities to web equality as well as some of the solutions to and outcomes of these challenges. In closing, a view for the full and equal enjoyment of web content, which considers technology, financial benefits, and the role of advocacy and regulations, is discussed.

Informed consent in psychiatric research - concepts and challenges.

Research involving vulnerable population of mentally impaired persons is raising considerable controversies from its very beginnings. These controversies are created around everlasting tensions between two positive duties: the duty to protect vulnerable subjects, and the duty not to deny them potential benefits. Most of the contemporary ethical guidelines and regulations, including most recent revision of the Declaration of Helsinki, permit these researches under certain ethical conditions. The notion of informed consent as a cornerstone of bioethics emerges as essential requisite of moral research. We are presenting some key concepts and safeguards regarding informed consent that researcher needs to be aware off when conducting a research involving mentally impaired persons. Theoretical and practical challenges that are arising from these safeguards are discussed with an overview of most recent scientific data. Lastly, we briefly address the most important legal standings that will be introduced in 2015, by new Croatian Law on the Protection of Persons with Mental Disorders.