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CONTEXT: COVID-19 has prompted debates between bioethicists and disability activists about Crisis Standards of Care plans (CSCs), triage protocols determining the allocation of scarce lifesaving care. METHODS: We examine CSCs in 35 states and code how they approach disability, comparing states that have revised their plans over time to those that have not. We offer ethical and legal analyses evaluating to what extent changes to state policy aligned with disability rights law and ethics during the early pandemic and subsequently as stakeholder engagement grew. FINDINGS: While disability rights views were not well represented in CSCs that were not updated or updated early in the pandemic, states that revised their plans later in the pandemic were more aligned with advocate priorities. However, many CSCs continue to include concerning provisions, especially the reliance on long-term survival, which implicates considerations of both disability rights and racial justice. CONCLUSIONS: The disability rights movement's successes in influencing state triage policy should inform future CSCs and set the stage for further work on how stakeholders influence bioethics policy debates. We offer thoughts for examining bioethics policy making reflecting the processes by which activists seek policy change and the tension policy makers face between expert delegation and mediating values conflicts.
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COVID-19 , Humanos , Pandemias , SARS-CoV-2 , Justiça Social , Padrão de CuidadoRESUMO
"Bring your whole self to work" remains a common mantra of supporters of workplace diversity, equity, and inclusion ("DEI").1 For example, disability rights advocates have long contended that hiding or downplaying one's disability from one's colleagues at work "create[s] an invisible layer of additional work for the individual" in being accepted at the job and negatively affects productivity.2 LGBTQ+ rights advocates have raised similar points, noting that hiding or downplaying one's sexual orientation or gender identity from one's colleagues hinders internal advancement of LGBTQ+ workers.3 As recently as 2019, however, a Deloitte study found that sixty-one percent of workers hid or downplayed one or more of their identities from their colleagues at work.4.
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Pessoas com Deficiência , Identidade de Gênero , Feminino , Humanos , Masculino , Local de TrabalhoRESUMO
This Viewpoint reviews the history of mandates governing access to medical diagnostic equipment in Section 504 of the Rehabilitation Act of 1973 and reviews the new rules.
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Based on interviews with a variety of participants, Vikram Patel and colleagues advocate for philosophical and practical progress toward recognizing decision-making capacity in people with psychosocial disabilities.
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Pessoas com Deficiência/legislação & jurisprudência , Direitos Humanos , Tratamento Psiquiátrico Involuntário , Transtornos Mentais/terapia , Pessoal Administrativo , Tomada de Decisões , Pessoas com Deficiência/psicologia , Pessoal de Saúde , Direitos Humanos/legislação & jurisprudência , Humanos , Entrevistas como Assunto , Tratamento Psiquiátrico Involuntário/ética , Tratamento Psiquiátrico Involuntário/legislação & jurisprudência , Competência Mental , Organizações , Autonomia Pessoal , Nações UnidasRESUMO
Globally, more than 1 billion people with disabilities are disproportionately and differentially at risk from the climate crisis. Yet there is a notable absence of climate policy, programming, and research at the intersection of disability and climate change. Advancing climate justice urgently requires accelerated disability-inclusive climate action. We present pivotal research recommendations and guidance to advance disability-inclusive climate research and responses identified by a global interdisciplinary group of experts in disability, climate change, sustainable development, public health, environmental justice, humanitarianism, gender, Indigeneity, mental health, law, and planetary health. Climate-resilient development is a framework for enabling universal sustainable development. Advancing inclusive climate-resilient development requires a disability human rights approach that deepens understanding of how societal choices and actions-characterised by meaningful participation, inclusion, knowledge diversity in decision making, and co-design by and with people with disabilities and their representative organisations-build collective climate resilience benefiting disability communities and society at large while advancing planetary health.
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Pessoas com Deficiência , Resiliência Psicológica , Humanos , Direitos Humanos , Saúde Mental , Mudança ClimáticaRESUMO
The United Nations Convention on the Rights of Persons with Disabilities requires states parties to 'recognize that persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life.' This mandate has sparked debate about the interpretation of legal capacity, including within the criminal context as applied to the retrogressively named 'insanity defense.' Yet, under-examined are two questions: First, what defenses should defendants with psychosocial disabilities be able to invoke during criminal prosecutions? Second, what kind of evidence is consistent with, on the one hand, determining a defendant's decision-making capacity to establish culpability and, on the other hand, the right to equal recognition before the law? Developments in neuroscience offer a unique prism to grapple with these issues. We argue that neuroscientific evidence of impaired decision-making, insofar as it presents valid and interpretable diagnostic information, can be a useful tool for influencing judicial decision-making and outcomes in criminal court. In doing so, we oppose the argument espoused by significant members of the global disability rights community that bioscientific evidence of psychosocial disability should be inadmissible to negate criminal responsibility. Such a position risks more defendants being punished harshly, sentenced to death, and placed in solitary confinement.
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Despite scientific and technological advances in the field of assistive technology (AT) for people with visual impairment (VI), technological designs are frequently based on a poor understanding of the physical and social context of use, resulting in devices that are less than optimal for their intended beneficiaries. To resolve this situation, user-centred approaches in the development process of AT have been widely adopted in recent years. However, there is a lack of systematization on the application of this approach. This systematic review registered in PROSPERO (CRD42022307466), assesses the application of the ISO 9241-210 human-centred design principles in allegedly "user-centred designed" AT developments for persons with VI (see Supplementary PROSPERO Protocol). The results point to a wide variation of the depth of understanding of user needs, a poor characterization of the application of the User Centred Design (UCD) approach in the initial design phases or in the early prototyping, and a vague description of user feedback and device iteration. Among the principles set out in ISO 9241-210, the application of 5.6: "the design team includes multidisciplinary skills and perspectives" is the one for which the least evidence is found. The results show there is not enough evidence to fully assess the impact of UCD in (1) promoting innovation regarding AT products and practices, and (2) Judging if AT produced following such standards is leading to better user access, wellbeing outcomes and satisfaction. To address this gap it is necessary to, first, generate better implementation of UCD in AT development and second, to strengthen evidence regarding the implementation and outcomes of using UCD for AT. To better engage with the realities of persons with VI, we propose capacity building across development teams regarding UCD, its principles and components; better planning for UCD implementation; and cross-fertilization across engineering disciplines and social and clinical science. Systematic Review Registration: https://www.crd.york.ac.uk/PROSPERO/display_record.php?RecordID=307466 PROSPERO (CRD42022307466).
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Stigma against mental disability within the medical field continues to impose significant barriers on physicians and trainees. Here, we examine several implications of this stigma and propose steps toward greater inclusion of persons with mental disabilities in the physician workforce.
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Médicos , Saúde Pública , Humanos , Estigma Social , Recursos HumanosRESUMO
Within Israeli Muslim society, men with intellectual disabilities are likely to marry nondisabled women through arranged marriages and create families. This article explores the role of grandparents with these families from the perspective of each family's social worker. A thematic analysis was conducted of 19 semistructured interviews with Muslim social workers serving Muslim families with intellectually disabled fathers. Consistent with cultural norms, paternal grandparents are extremely involved in the lives of these couples and hold responsibilities in many aspects of these couples' family lives. Social workers reported that the nondisabled wives, however, viewed the engagement as intrusive and controlling. Maternal grandparents' contributions were crucially supportive, albeit limited by Muslim cultural norms that placed households under paternal family control. Social workers had conflicted feelings regarding paternal grandparent involvement. Social workers working with Muslim fathers with intellectual disabilities should promote supportive paternal grandparent involvement and ensure that such engagement does not undermine the autonomy or well-being of the nondisabled mothers. Practice guidelines are presented.
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Avós , Pai , Feminino , Humanos , Islamismo , Masculino , Serviço Social , Assistentes SociaisRESUMO
Ethical obligations to minimize harms and maximize benefits of diagnosis and treatment of disorders without biomarkers include navigating difficult-to-measure, perhaps clinically inexplicable, symptoms. Among potential harms are public stigma, self-stigma, label avoidance, and the negative influence these stigmas have on self-esteem, quality of life, employment, and housing. Among potential benefits are patients becoming active agents in managing their illnesses, social acceptance, and access to evidence-based treatments. Ethical complexities clinicians face when trying to develop treatment plans while heeding key details from patients' narrative accounts prompt questions about how to best adhere to evidence in understudied domains of medicine.
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Qualidade de Vida , Estigma Social , Biomarcadores , Humanos , AutoimagemRESUMO
Individuals living with disabilities are underrepresented in the physician workforce, despite benefits of inclusion. This article describes how both ableism in admissions processes and expectations set by technical standards can perpetuate harm. The authors advocate for active attention to disability diversity and equity in medical school admissions.
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Pessoas com Deficiência , Médicos , Humanos , Faculdades de Medicina , Discriminação SocialRESUMO
Purpose: United Nations human rights treaties and domestic law require social workers to support the parenting rights of persons with intellectual disabilities. Social workers are also required to protect the health and well-being of those clients' children. This study explores the experiences, challenges, and complex attitudes of Israeli social workers regarding parenthood by their clients with intellectual disabilities.Methods: A qualitative method employed semi-structured interviews with twenty-one social workers. A thematic analysis identified major themes.Results: Social workers recognized the parental desires of clients with intellectual disabilities and acknowledged their role in supporting those individuals. Nevertheless, most of the social workers expressed negative perceptions regarding the right or capability of clients with intellectual disabilities to parent. Social workers thus felt the tension between their personal reservations and their professional duty to support these clients. Regardless of individual attitudes, social workers uniformly asserted that greater state and community support was needed to enable the parental capacity of their clients.Conclusions: In addition to increasing state and community support for parents with intellectual disabilities, additional training is needed for empowering social workers to act on behalf of these clients in Israel.Implications for RehabilitationSocial workers hold critical roles for parents with intellectual disabilities and are required to support their clients' parenting while ensuring the health and well-being of their children.Israeli social workers balance negative or ambivalent attitudes regarding the capability of parents with intellectual disabilities against a desire to honor their duty to support these clients.State and community support for parents with intellectual disabilities must be increased.Additional training is needed for empowering social workers to act on behalf of these clients in Israel.
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Deficiência Intelectual , Atitude , Criança , Humanos , Israel , Pais , Assistentes SociaisRESUMO
INTRODUCTION: Suicide is a global problem and accurate assessment of risk for self-harm is critical. Even morally principled clinicians can manifest bias when assessing self-harm in patients with physical disabilities such as spinal cord injury (SCI). Assessment of self-harm is an obligation for health care clinicians and overestimating or underestimating risk may undermine a patient's trust in their care, possibly leading to less engagement, increased apathy about having an interest in living, and less adherence to healthy treatment options. CASE PRESENTATION: Introduces readers to three biases that can impact decision-making regarding a patient with a disability when assessing the patient's risk for self-harm: (1) ineffectual bias, (2) fragile friendliness bias, and (3) catastrophe bias. These preconceptions are derived from a mix of paternalism, projection, low expectations, pity, and infantilization. In this paper, we explain how each bias can affect clinical decision-making regarding diagnosis, treatment, prognosis, and prevention for patients with SCI within a common case scenario. Readers can employ personal reflection and potential self-application when they encounter individuals with SCI in and outside clinical settings. DISCUSSION: Unchecked biases toward the disabled and patients with SCI can undermine ethical caregiving. Biases are habits of mind and thoughtful clinical and education interventions can improve clinical practice. The literature on health care bias with other minority groups is instructive for investigating biases related to patients with disabilities, and especially for clinicians outside of rehabilitation medicine.
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Tomada de Decisão Clínica , Comportamento Autodestrutivo/diagnóstico , Traumatismos da Medula Espinal/psicologia , Humanos , Medição de Risco , Comportamento Autodestrutivo/complicações , Traumatismos da Medula Espinal/complicaçõesRESUMO
A human rights-based approach (HRBA) to health has long been seen as an important way in which to address public health needs in a manner that is equitable and conducive to social justice. Yet the actual content of an HRBA to health remains unspecific, and therefore implementation remains heterogeneous. This situation is even more challenging in the field of mental health, where human rights considerations are particularly complex and have emerged out of a history of myriad violations. Even when research has been conducted into mental health, it has focused predominantly on the Global North, raising questions of contextual and cultural relevance. Accordingly, this study examined the issue from the perspectives of stakeholders in Kenya who consider their work or the services they use to be rights based. It explored the key principles and interventions deemed to constitute an HRBA to mental health care and psychosocial support, the perceived benefits of such approaches, and the main barriers and supports relevant for implementation. The results produced seven key principles and corresponding interventions. Among other things, it highlighted the importance of economic well-being and self-efficacy, as well as the reduction of barriers to implementation, such as stigma and lack of adequate resourcing. Two key tensions were apparent-namely, the un/acceptability of coercion and the role of traditional and faith-based modalities in an HRBA to mental health care and psychosocial support.
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Saúde Mental , Sistemas de Apoio Psicossocial , Direitos Humanos , Humanos , Quênia , Estigma SocialRESUMO
Stroke is the second leading cause of death worldwide and a leading cause of adult disability worldwide. More than a third of individuals presenting with strokes are estimated to have a preexisting disability. Despite unprecedented advances in stroke research and clinical practice over the past decade, approaches to acute stroke care for persons with preexisting disability have received scant attention. Current standards of research and clinical practice are influenced by an underexplored range of biases that may hinder acute stroke care for persons with disability. These trends may exacerbate unequal health outcomes by rendering novel stroke therapies inaccessible to many persons with disabilities. Here, we explore the underpinnings and implications of biases involving persons with disability in stroke research and practice. Recent insights from bioethics, disability rights, and health law are explained and critically evaluated in the context of prevailing research and clinical practices. Allowing disability to drive decisions to withhold acute stroke interventions may perpetuate disparate health outcomes and undermine ethically resilient stroke care. Advocacy for inclusion of persons with disability in future stroke trials can improve equity in stroke care delivery.
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Atenção à Saúde/ética , Pessoas com Deficiência , Acidente Vascular Cerebral/terapia , Temas Bioéticos , Tomada de Decisão Clínica/ética , Ensaios Clínicos como Assunto , Atenção à Saúde/legislação & jurisprudência , Pessoas com Deficiência/legislação & jurisprudência , Pessoas com Deficiência/reabilitação , Disparidades em Assistência à Saúde , Humanos , Direitos do Paciente/ética , Direitos do Paciente/legislação & jurisprudênciaRESUMO
BACKGROUND: Family members of parents with intellectual disabilities (ID) are viewed as their main source of support. However, the existence of family involvement itself does not guarantee that such support will be beneficial. AIMS: This study draws on the perspectives of social workers to describe and evaluate involvement by Israeli family members (grandparents) in the lives of their adult children with ID (parents with ID) who themselves have become parents. METHOD: A thematic analysis was conducted in 21 semi-structured interviews with social workers serving parents with ID through social service departments. RESULTS: From the social workers' perspectives, grandparent attitudes regarding their adult children with ID procreating and parenting ranged from strong resistance to active encouragement. Two sub-themes of grandparent involvement were identified from the social workers' perspectives: the critical role of grandparent support, and the complex relationships between grandparents and the parents with ID. Two further and interrelated subthemes emerged on the role of social worker engagement with grandparents. CONCLUSIONS: Professionals should be aware that grandparent involvement can either support or undermine the parenting function of parents with ID. Social service professionals need to promote family involvement that empowers parents with ID by supporting their needs and roles, but without supplanting their primary parenting activities.
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Filhos Adultos/psicologia , Relações Familiares , Avós/psicologia , Deficiência Intelectual , Pais/psicologia , Assistentes Sociais/psicologia , Adulto , Atitude , Feminino , Humanos , Deficiência Intelectual/psicologia , Deficiência Intelectual/reabilitação , Relação entre Gerações , Masculino , Pessoa de Meia-Idade , Percepção Social , Apoio SocialRESUMO
BACKGROUND: Family life is a near-universal condition and a fundamental human right. It can also have a significant impact on mental health, including recovery from mental health conditions. In India, families play a considerable role, representing a source of social, cultural, religious and, often, financial support. However, families can also play a stigmatising role. AIM: To examine the experiences of mental health service users (MHSUs) relating to stigma and support provided by family members and to consider ways in which family support can be improved. METHOD: This is a qualitative study. A total of 17 residential MHSUs at the Ahmedabad Hospital for Mental Health were interviewed. The results were evaluated using thematic content analysis. RESULTS: The results revealed that all 17 MHSUs considered their families to be important sources of support, while 14 of the 17 MHSUs also experienced stigma emanating from their families. A total of 11 experienced lack of knowledge, 4 spoke of prejudicial attitudes and 5 mentioned discriminatory behaviours. There were important gender differences in experiences. MHSUs mentioned needs ranging from education and peer support for family members to financial support. CONCLUSIONS: Families act both as sources of support and stigmatisation. Education needs are considerable, while the need for peer support for families and resources to aid families in supporting people with mental health conditions are also important considerations.