The #Rights4metoo Scale: a tool to monitor compliance with the convention on the rights of persons with disabilities / La escala #YoTambién Tengo Derechos: Una herramienta para monitorizar la convención sobre los derechos de las personas con discapacidad

There is a lack of psychometrically validated tools to evaluate the extent to which people with intellectual disability (ID) truly exercise their rights in all areas of their lives. The aim of this article is to provide evidence about the usefulness and reliability of the pilot version of the #Rights4MeToo Scale, an instrument based on the Quality of Life Supports Model. The scale can be self-reported by people with ID or hetero-reported by family members or professionals. First, through a qualitative study with self-advocates with ID, we provide evidence about the need and usefulness of this tool to understand and monitor compliance with the Convention on Rights of Persons with Disabilities (CRPD). Next, we present preliminary data on the internal consistency of the items that make up the pilot version, analyzing the responses of 1,200 people with ID, family members, and professionals. The #Rights4MeToo Scale will make it possible to conduct national studies on compliance with the CRPD, not to mention international comparative studies when the scale is adapted to the legal and cultural context of other countries. (AU)

Resulta urgente e ineludible contar con herramientas, con adecuadas evidencias de validez y fiabilidad, que permitan evaluar hasta qué punto las personas con discapacidad intelectual (DI) verdaderamente ejercen sus derechos en todos los ámbitos de su vida. El objetivo de este artículo consiste en proporcionar evidencias acerca de la utilidad y la fiabilidad de la versión preliminar de la escala #YoTambién Tengo Derechos, un instrumento diseñado a partir del Modelo de Calidad de Vida y Apoyos. La escala puede ser autoinformada por personas con DI o heteroinformada por familiares o profesionales. Por un lado, mediante un estudio cualitativo con autogestores con DI se proporcionan evidencias acerca de la necesidad y la utilidad de esta herramienta para conocer y monitorizar el cumplimiento de la Convención. Por otro lado, presentamos datos preliminares de la consistencia interna de los ítems, analizando las respuestas de 1.200 personas con DI, familiares y profesionales. La escala #YoTambién Tengo Derechos permitirá llevar a cabo estudios nacionales sobre el cumplimiento de la Convención sobre los Derechos de las Personas con Discapacidad y, con su adaptación al contexto legal y cultural de otros países, estudios comparativos internacionales. (AU)

"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.

Las personas con discapacidad intelectual como víctimas de delitos contra la libertad sexual: una realidad invisible / People with Intellectual Disability as Victims of Sexual Offences: An Invisible Reality

El presente trabajo tiene por objeto conocer los ajustes de procedimiento que se desarrollan durante los procesos judiciales ante hechos constitutivos de abuso o agresión sexual cuando la víctima presenta una discapacidad intelectual o del desarrollo (DID). Además, analiza las características de víctimas con DID y agresores, aportando información adicional sobre el proceso de denuncia. Para ello, se analizaron un total de 56 sentencias resueltas en un periodo de cuatro años (2014-2018), extrayendo informa­ción objetiva de las mismas con respecto a los aspectos más relevantes referidos a la víc­tima, el delito, el agresor y al proceso judicial. Del análisis realizado podemos concluir la existencia de multitud de obstáculos que aún siguen presentes en la práctica judicial española, siendo necesaria una formación exhaustiva de las personas vinculadas a los sistemas procesales en aspectos referidos a esta discapacidad: la víctima declara en reite­radas ocasiones, especialmente cuando se juzga un delito de agresión sexual, sin ningún tipo de adaptación o apoyo profesional. Señalamos asimismo la necesidad de evaluar la huella psicológica que pudiera presentar la víctima, así como desterrar mitos con respec­to a las discapacidades del desarrollo que dificultan el derecho a acceder y participar en los procedimientos judiciales en condiciones de igualdad

The following paper aims to analyze the provision of procedural accom­modations during the legal process to victims of sexual abuse or sexual assault with an intellectual or developmental disability (IDD). It also examines the characteristics of victims with IDD and their aggressors, providing additional information on the re­porting process. To this end, a total of 56 sentences resolved over a period of four years (2014-2018) were analyzed, extracting objective information regarding the most relevant aspects of the crime committed, the victim, the aggressor, and the legal process. The obtained results showed the existence of different obstacles that are still present in the Spanish jurisprudence, requiring an appropriate training for those working in the field of administration of justice: the victim declares repeatedly, especially when a crime of sexual assault is being judged, and without any type of accommodation or professional support. We also point out the need to evaluate the psychological consequences that the victim may experience, and to dispel myths regarding developmental disabilities that hinder access and participation in legal proceedings under equal conditions

Nivel de conocimiento de aspectos legales de la enfermedad de Alzheimer en cuidadores, estudiantes y profesionales sanitarios / Understanding of legal aspects of Alzheimer disease among caregivers, medical students, and healthcare professionals

INTRODUCCIÓN: La modificación de la capacidad civil es una medida de protección que implica un procedimiento judicial, del cual es necesario conocer algunos indicadores para facilitar su aplicación en una población tan vulnerable como en los pacientes con enfermedad de Alzheimer. Cuando no se conoce y no se protege adecuadamente a esta población pueden darse situaciones de riesgo que los profesionales de la salud deben evitar. Sujetos y métodos: Se diseñó una encuesta cerrada a cuidadores informales de enfermedad de Alzheimer, población general, estudiantes y profesionales sanitarios para determinar el grado de conocimiento del concepto de modificación de la capacidad civil. RESULTADOS: Total de 401 personas; 100 cuidadores, 117 personas de la población general, 128 estudiantes y 58 profesionales sanitarios. El 66,1% (265) fueron mujeres. La edad media fue de 43,2 ± 0,9 años. La puntuación media de la encuesta fue de 7,7 ± 0,9. En los cuidadores fue de 7,5 ± 0,18, 6,9 ± 0,16 en población general, 8,4 ± 0,17 en estudiantes y 8,7 ± 0,20 en profesionales sanitarios (p = 0,000). El 78,8% de los sujetos encuestados no habían recibido información sobre las cuestiones legales de la demencia. En referente a los estudiantes no presentaron diferencias significativas en relación con los diferentes cursos (p > 0,05). CONCLUSIONES: El grado de conocimiento de la modificación de la capacidad civil y la legislación en relación con los aspectos legales relacionados con el deterioro cognitivo es bajo entre cuidadores, población general e incluso entre estudiantes del grado de medicina. Sería importante diseñar estrategias para mejorar el conocimiento, sobre todo en los futuros profesionales sanitarios

INTRODUCTION: Modification of legal capacity is a protective measure involving a judicial procedure; a deeper understanding of this concept is necessary for its execution in such vulnerable populations as patients with Alzheimer disease (AD). Unawareness of a patient's legal capacity and failure to adequately protect them may give rise to situations of avoidable risk. PATIENTS AND METHODS: We designed a closed survey for informal caregivers of patients with AD, the general population, medical students, and healthcare professionals to determine the degree of understanding of the concept of modified legal capacity. RESULTS: The survey was administered to a total of 401 individuals: 100 caregivers, 117 members of the general population, 128 medical student s, and 58 healthcare professionals. Women accounted for 66.1% of the sample (n= 265); mean age (SD) was 43.2 (0.9) years. The overall mean survey score was 7.7 (0.9). By group, caregivers scored 7.5 (0.18), the general population scored 6.9 (0.16), students scored 8.4 (0.17), and healthcare professionals scored 8.7 (0.20) (P = .000). Of all respondents, 78.8% had not received information on legal issues related to dementia. Among students, no significant differences in survey score were observed between members of different years (P > .05). CONCLUSIONS: There is a low level of understanding of modified legal capacity and of the legislation governing issues related to cognitive impairment among caregivers, the general population, and even medical students. It is important to design strategies to improve understanding of the concept, particularly among future healthcare professionals

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.

Derecho y salud mental: logros conseguidos y retos pendientes en España. Informe SESPAS 2020 / Law and mental health (goals achieved and pending challenges in Spain). SESPAS report 2020

Tras la aprobación de la Constitución ha habido importantes avances en el estatuto jurídico del paciente en general y del paciente mental en particular. Sin embargo, la regulación de los derechos del paciente mental ha sido menos detallada y más incompleta. Existen en esta materia importantes carencias, al ser la regulación existente mínima, sin tener en cuenta los más relevantes instrumentos internacionales de referencia. Con la aprobación de la Convención de Nueva York se han producido importantes reformas legales respecto a las personas con discapacidad. No ha sucedido lo mismo con los enfermos mentales. En esta materia existe un considerable retraso en la adaptación de nuestro ordenamiento jurídico a la Convención. Y además se plantean importantes problemas para su implementación, al cambiar el modelo asistencial tradicional (rehabilitador) por el modelo social y al utilizarse en la Convención conceptos (así, capacidad jurídica) no coincidentes con otros propios de la tradición legislativa española. La interpretación que de la Convención ha llevado a cabo el Comité de Derechos de las Personas con Discapacidad añade dificultades para la homologación de nuestro ordenamiento a la Convención. Con este panorama es evidente que quedan pendientes muchos retos para abordar en el futuro, y para ello es preciso el establecimiento de un previo diálogo racional

After the approval of the Constitution there have been major improvements on the juridical status of the patient in general and specifically of the mental kind. Nevertheless the regulation of the rights regarding the mental patients has been less thorough. Consequently there are significant deficiencies regarding this matter, being the existing regulations minimal, those which do not take on account the most relevant international reference tools. With the approval of the New York Convention major legal reforms have been introduced regarding the sensory and physically handicapped. However not the same has happened with the case of those with mental conditions. On this subject exists a sizable delay on the adaptation of our juridical application to this Convention. Furthermore major problems arise for its implementation. This changes the traditional assistance model (towards rehabilitation) for the social model and uses new concepts brought by the Convention (legal capacity) which do not coincide with other ones characteristic of the Spanish legislative tradition. The interpretation of the Convention done by the Committee on the Rights of Persons with Disabilities adds difficulties to validate our regulation to the Convention. With all this in mind it is clear to see that there are many challenges to take on the future, being necessary for this the implementation of a previous rational dialogue

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.

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.

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.

El deterioro cognitivo en la vejez. Entre la vulnerabilidad y la discapacidad / Cognitive impairment in old age. Between vulnerability and disability / La deterioració cognitiva en la vellesa. Entre la vulnerabilitat i la discapacitat

En las páginas que siguen se ilustran las tendencias que existen en Europa en materia de protección de adultos y el impacto que ha tenido el Convenio de Nueva York de 2006, sobre los derechos de las personas con discapacidad, en los sistemas jurídicos nacionales. Más concretamente, se analiza el sistema legal de protección en Cataluña, denominado "assistència", que es una institución adecuada para una multitud de casos, pero especialmente apta para aquellas personas frágiles que, debido a su avanzada edad, sufren un deterioro físico y/o mental o intelectual. La conclusión es que esta institución debe sustituir a aquellas otras que implican una limitación judicial de la capacidad de obrar y convertirse en una institución de aplicación general no sólo en Cataluña, sino también en todo el territorio español

The following pages illustrate the trends in Europe in terms of adult protection and the impact the Convention on the Rights of Persons with Disabilities (New York, 2006) has on national legal systems. In particular, the paper analyses the legal system of guardianship in Catalonia, called "assistència", which is a suitable institution for a myriad of cases and seems to be especially convenient for those fragile people who, due to advanced age, suffer physical and/or mental or intellectual deterioration. The conclusion is that it should replace institutions that involve judicial limitation of legal capacity and become an institution of general application in the whole Spanish territory

En les pàgines que segueixen s'il·lustren les tendències que existeixen a Europa en matèria de protecció d'adults i l'impacte que ha tingut el Conveni de Nova York, de 2006, sobre els drets de les persones amb discapacitat, en els sistemes jurídics nacionals. Més concretament, s'analitza el sistema legal de protecció a Catalunya, denominat "assistència", que és una institució adequada per a una multitud de casos, però especialment apta per a aquelles persones fràgils que, a causa de la seva avançada edat, sofreixen una deterioració física i mental o intel·lectual. La conclusió és que aquesta institució ha de substituir aquelles altres que impliquin una limitació judicial de la capacitat d'obrar i convertir-se en una institució d'aplicació general no només a Catalunya, sinó també a tot el territori espanyol

Cibervíctimas con discapacidad: cuestiones victimológicas y retos forenses / Cibervictims with disabilities: Victimological issues and forensic challenges

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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.