Análise da Política de Atenção Integral à Pessoa com Deficiência em uma capital da Região Nordeste do Brasil / Analysis of the Comprehensive Care Policy for Persons with Disabilities in a capital city in the Northeast Region of Brazil

Resumo Na cidade do Recife, a primeira formulação de uma política de saúde direcionada às pessoas com deficiência (PCD) ocorreu 14 anos após a publicação da Política Nacional. Nesse sentido, o artigo analisou o processo de formulação da Política Municipal de Atenção Integrada à Saúde da Pessoa com Deficiência da cidade do Recife em 2016. Por meio de um estudo de caso, foram estudados o contexto, atores, conteúdo e processo de formulação da política através da realização de análise documental e entrevistas com gestores, representantes do Conselho de Saúde e de entidades representativas da PCD. A Política estudada foi formulada em um macrocontexto de vulnerabilidade social acentuado pelo golpe de 2015 e por medidas severas de austeridade fiscal que têm impactado desproporcionalmente as PCD. No microcontexto, percebeu-se influência da área de Direitos Humanos, das eleições municipais e da epidemia da síndrome congênita pelo Zika vírus, que descortinou um vazio assistencial. Houve incipiente participação das PCD, que desconhecem seu conteúdo e pouco acompanham sua implementação. A participação social é fundamental para atender às necessidades das PCD, por isso, pode-se afirmar que é imperativo o estabelecimento de uma relação dialógica em torno da Política e dos desafios de sua implementação.

Abstract In the city of Recife, the first formulation of a health policy aimed at people with disabilities (PWD) took place 14 years after the publication of the National Policy. In this sense, the article has analyzed the process of formulating the Municipal Policy for Integrated Health Care for People with Disabilities in the city of Recife in 2016. Through a case study, the context, actors, content and process of policy formulation were studied through document analysis and interviews with managers, representatives of the Health Council and representative entities of PWD. The Policy studied was formulated in a macro context of social vulnerability accentuated by the 2015 coup and by severe fiscal austerity measures that have disproportionately impacted PWDs. In the micro context, the influence of the Human Rights area, municipal elections and the epidemic of the Congenital Syndrome by the Zika Virus was noticed, which revealed a care void. There was an incipient participation of PWDs, which are unaware of its content and rarely follow its implementation. Social participation is essential to meet the needs of PWDs, so it can be said that it is imperative to establish a dialogic relationship around the Policy and the challenges of its implementation.

Examining determinants of lifestyle interventions targeting persons with intellectual disabilities supported by healthcare organizations: Usability of the Measurement Instrument for Determinants of Innovations.

BACKGROUND: Due to complex processes of implementation of innovations aimed at persons with intellectual disabilities in healthcare organizations, lifestyle interventions are not used as intended or not used at all. In order to provide insight into determinants influencing this implementation, this study aims to ascertain if the Measurement Instrument for Determinants of Innovations (MIDI) is useful for objectively evaluating implementation. METHOD: With semi-structured interviews, data concerning determinants of implementation of lifestyle interventions were aggregated. These data were compared to the determinants questioned in the MIDI. Adaptations to the MIDI were made in consultation with the author of the MIDI. RESULTS: All determinants of the MIDI, except for that concerning legislation and regulations, were represented in the interview data. Determinants not represented in the MIDI were the level of intellectual disabilities, suitability of materials and physical environment, multi-levelness of interventions and several persons who could be involved in the intervention, such as direct support persons (DSPs), a therapist or family, and the communication between these involved persons. CONCLUSION: The present authors suggested making adjustments to existing questions of the MIDI in order to improve usability for deployment in organizations that provide care to persons with intellectual disabilities. The adjustments need to be tested with other interventions.

[Infantile acquired brain injury, a personal experience. Demands from the socio-familial point of view]. / Daño cerebral sobrevenido infantil, una experiencia personal. Reclamaciones desde el punto de vista sociofamiliar.

We report on the experience of a family in which the youngest child has acquired brain injury and the struggle undertaken by the family to improve the neurorehabilitation resources in the public health service. The article outlines the main demands, from the socio-familial point of view, as regards the improvement of neurological rehabilitation and the resources needed to deliver it.

TITLE: Daño cerebral sobrevenido infantil, una experiencia personal. Reclamaciones desde el punto de vista sociofamiliar.Se describe la experiencia de una familia en la que el hijo menor tiene daño cerebral sobrevenido y la lucha emprendida por la familia para mejorar los recursos neurorrehabilitadores de la sanidad publica. Se recogen las principales reclamaciones, desde el punto de vista sociofamiliar, en cuanto a la mejora en la atencion neurorrehabilitadora y los recursos necesarios.

Sombras y sombras en la aplicación de la ley de dependencia / Shades and shadows in the application of the long-term care law

El objetivo del presente trabajo es realizar un breve repaso a los aspectos más controvertidos de la Ley 39/2006, de Promoción de la Autonomía y Atención a las Personas en Situación de Dependencia, que han protagonizado en los últimos años fuertes debates entre el Estado y las comunidades autónomas. Los problemas de financiación surgidos tras una mala planificación inicial, el declive en las aportaciones de la Administración General del Estado en los últimos años, incluyendo la supresión del nivel acordado, y una baja recaudación del usuario mediante copago, han colmado de esfuerzo económico a las comunidades autónomas por mantener dicha política social, en un ambiente gobernado por la falta de transparencia del sistema. Por otro lado, las reformas normativas de mediados de 2012, con la finalidad de aliviar los presupuestos estatales y autonómicos, han supuesto un claro retroceso en el espíritu de la ley y una pérdida de bienestar de los dependientes y sus familias. Todas estas premisas han contribuido a un panorama muy heterogéneo de aplicación territorial de la norma, en el que se observan claras diferencias en las listas de espera, abuso de concesión de prestaciones económicas por parte de algunas regiones y disparidades en el número de solicitudes de acceso a las prestaciones y los servicios (AU)

The aim of this study was to provide a brief overview of the most controversial aspects of the Spanish Act of Promotion of Personal Autonomy and Long-Term Care 39/2006, which, in the last few years, has led to heated debates between the state and the autonomous regions. Because of the funding problems due to initial poor planning, the decline of contributions from the Spanish Government in the last few years, including the suppression of the agreed level, and low cash collection from the user through copayment, the autonomous regions have had to provide significant economic resources to maintain this social policy in an environment characterised by a lack of transparency of the system. In addition, the regulatory reforms of mid-2012 to ease the burden on state and autonomous budgets have represented a clear setback to the spirit of the act and a loss of welfare to dependent individuals and their families. All these circumstances have contributed to a widely heterogeneous picture in the territorial implementation of the act, with clear differences in waiting lists, abuse in the granting of cash benefits in some regions, and differences in the number of applications for benefits and services (AU)

Final Priority; Rehabilitation Training: Vocational Rehabilitation Technical Assistance Center--Youth With Disabilities. Final priority.

The Assistant Secretary for Special Education and Rehabilitative Services announces a priority under the Rehabilitation Training program. The Assistant Secretary may use this priority for competitions in fiscal year (FY) 2015 and later years. This priority is designed to ensure that professionals working in State vocational rehabilitation (VR) agencies receive the technical assistance (TA) they need to provide youth with disabilities with services and supports that lead to postsecondary education and competitive integrated employment.

Challenging the exclusion of gambling disorder as a disability under the Americans with Disabilities Act.

The Americans with Disabilities Act explicitly excludes "compulsive gambling" from its definition of disability, thus denying gambling addicts protection from employer discrimination based on their disorder. Since the enactment of the ADA, however, scientific understandings of gambling disorder have evolved to view the condition as an addiction, rather than as a compulsion or impulse-control disorder. This move is mirrored in the DSM-5's reclassification of gambling disorder under the category of "substance-related and other addictive disorders." This Note contends that gambling disorder would qualify as a "disability" under the ADA, were it not for the disorder's current statutory exclusion. This Note therefore recommends that the ADA be amended to bring gambling disorder within its coverage. Such a change would not only reflect recent developments in the field of addiction psychology, but would also further the ADA's underlying purpose--to protect individuals with disabilities from workplace discrimination.

Approach to caring for developmentally disabled adults in the community: medical, ethical, and legal considerations.

OBJECTIVE: To review the medical, ethical, and legal obligations in caring for adults with developmental disabilities (DDs) living in the community. SOURCES OF INFORMATION: Google and MEDLINE searches were conducted using the terms disabled, disability, vulnerable, and community. The pertinent legislation was reviewed. MAIN MESSAGE: The treatment of a patient with DDs varies with factors such as the pathogenesis of the patient's current problem, comorbid conditions, the severity of his or her disabilities, and his or her current social supports. While the shift from institutional to community care for patients with DDs is widely accepted as being beneficial, providing high-quality community care has proven to be challenging. However, there is little research on how to effectively provide community support to adults with DDs. As primary care providers, family physicians are often the first point of contact for patients, and are responsible for both the coordination and the continuity of care. With the movement toward preventive care and early disease detection, the patient's active participation is also vital. The patient's values and goals are an essential consideration, even when they are contrary to the patient's good health or the clinician's own values. The legislation for vulnerable persons varies among the provinces. Thus, the obligation to report suspected abuse might depend on whether the vulnerable person is living in a care facility or the community; whether the person with the suspicion is a service provider or health care professional; and whether the specific circumstances fall within the legislative definition of abuse or neglect. CONCLUSION: Primary care providers must give adults with DDs compassionate care that respects the patients' wishes.

Human rights, civil rights: prescribing disability discrimination prevention in packaging essential health benefits.

This article explores rights-based approaches to protecting disabled people against inequities in access to health care services. Understanding health care as a human right, as is found in the UN Convention on the Rights of People with Disabilities (CRPD), fails to provide theoretical machinery for responding to certain pressing challenges. An alternative account, understanding health care as a civil right, proves more promising. This latter approach then is applied to the right to health care under the U.S. Affordable Care Act (ACA), which contains provisions that could be antithetical to, and thus fail to comply with, the nondiscrimination standard of meaningful access to health care benefits.

Expanding the horizons of disability law in India: a study from a human rights perspective.

Disabled/"differently abled" persons by virtue of being human have the right to enjoy human rights to life, liberty, equality, security, and dignity. However, due to social indifference, psychological barriers, a limited definition of "disability" entitling protection of law, and a lack of proper data, disabled persons in India remain an invisible category. Although several laws exit to ensure their full and effective participation in society, they remain insufficient as they are primarily based on the government's discretion. At the same time, whenever the judiciary finds an opportunity, it acts as a real protector of disabled persons, but it is not feasible to knock on the door of the judiciary for every request. Interestingly, various civil societies and human rights activists have occasionally asserted the rights of the disabled. However, unless the foundation stones of law are fortified, disabled persons cannot fully realize their rights. It is high time to enact effective laws, with timely implementation, to protect their interests and empower their capabilities that are based on a "rights-based approach" rather than on the charity, medical, or social approaches. Thus, the horizons of law must be expanded to provide a "human friendly environment" for all of the disabled to overcome the barriers that impair their development.

The right to language.

We argue for the existence of a state constitutional legal right to language. Our purpose here is to develop a legal framework for protecting the civil rights of the deaf child, with the ultimate goal of calling for legislation that requires all levels of government to fund programs for deaf children and their families to learn a fully accessible language: a sign language.