"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.

The experience of law enforcement officers interfacing with suspects who have an intellectual disability - A systematic review.

There is a high prevalence of people with intellectual disability (ID) among those in police custody. Consequently, law enforcement officers (LEOs) at the frontline of the criminal justice system are commonly required to interact with people who have ID. Notwithstanding the frequency of these interactions, research indicates that police exchanges with persons with ID frequently take place against a backdrop of tenuously-resourced disability awareness training. At the time of writing, a paucity of research data exists with respect to the experiences of LEOs operating within this training vacuum at an international level. A better understanding of their experiences could meaningfully inform research, training and improve support programmes for LEO's. We systematically reviewed six databases to identify studies published up to 1st December 2019 reporting the experience of LEOs interfacing with suspects who have an ID. Following a review of 670 abstracts, 16 studies were identified from five countries involving 983 LEOs. LEOs identified 1) a need for specialised training; 2) challenges in identifying people with ID; 3) a need to improve safeguards and 4) challenges in supporting/communicating with individuals who have ID through the investigation process.

Key components of supporting and assessing decision making ability.

People's ability to make decisions may be impaired for a wide range of reasons, including by mental health problems and learning disabilities. Individual autonomy, the ability to make decisions about our own lives, is a fundamental tenet of democratic societies. This has been reinforced by laws governing substitute and supported decision making and most significantly by the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). Article 12 of the UNCRPD requires everyone to have equal recognition before the law and, to achieve this, the necessary support and safeguards must be available. There has been considerable debate about the important theoretical and philosophical issues involved and growing research about the practice complexities of supporting and assessing decision making ability or mental capacity. This article aims to present some of the key components of the support and assessment process to inform further service development and training in this area. The key components were identified as part of a qualitative, participatory research project which explored the decision making experiences of people with mental health problems and/or learning disabilities. The conventional approach to the assessment of capacity is to consider four main components, whether the person is able to: understand, retain, use and weigh, and communicate the information needed to make the decision at that time. The findings from this research study suggest that people generally don't usually talk about their experiences of decision making in terms of these four components and approaches to supporting people to make decisions don't necessarily break the support down to explicitly address the assessment process. However, considering support for all aspects of the functional test may be helpful to ensure it is as comprehensive as possible. The challenges involved in providing effective support and assessing decision making ability are discussed and the article concludes with some of the implications for training, service development and practice.

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.

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.

The rehabilitation of the mentally disabled in the community act in Israel: Entrepreneurship, leadership, and capitalizing on opportunities in policy making.

This paper examines the role of policy entrepreneurs in the formation of a rehabilitation program in the field of mental health in Israel, shedding light on their role in general and specifically in mental health policy formation. Our research is based on a historical case study. The legislation process was examined through interviews with key actors in the legislative process and archival materials. While in general our findings reinforced existing literature, our research also revealed new information on several topics: organizations as policy entrepreneurs; inter-sectorial coalitions of entrepreneurs; and possible problems arising from the concept of 'leadership by example'.

'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.

'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.

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.

Trends in the Educational Placement of Students With Intellectual Disability in the United States Over the Past 40 Years.

In 1975, federal law mandated that children with disabilities be educated in their least restrictive environment, or alongside peers without disabilities in general education classrooms to the maximum extent appropriate. More than 40 years later, I investigated how national trends in educational placement have changed over time for students with intellectual disability. Specifically, I examined the degree placements have trended toward less restrictive environments. I found historical trends of incremental progress toward less restrictive settings, but no evidence of such progress in recent years. Furthermore, most students were educated predominantly in segregated settings every year. I discuss how these findings relate to previous studies, as well as implications for individualized education program teams and advocates for educational inclusion.