The Eligibility Definition Used in the Social Security Administration’s Disability Programs Needs to be Changed

In its October 2003 report on the definition of disability used by the Social Security Administration’s (SSA’s) disability programs [i.e., Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) for people with disabilities], the Social Security Advisory Board raises the issue of whether this definition is at odds with the concept of disability embodied in the Americans with Disabilities Act (ADA) and, more importantly, with the aspirations of people with disabilities to be full participants in mainstream social activities and lead fulfilling, productive lives. The Board declares that “the Nation must face up to the contradictions created by the existing definition of disability.” I wholeheartedly agree. Further, I have concluded that we have to make fundamental, conceptual changes to both how we define eligibility for economic security benefits, and how we provide those benefits, if we are ever to fulfill the promise of the ADA. To convince you of that proposition, I will begin by relating a number of facts that paint a very bleak picture – a picture of deterioration in the economic security of the population that the disability programs are intended to serve; a picture of programs that purport to provide economic security, but are themselves financially insecure and subject to cycles of expansion and cuts that undermine their purpose; a picture of programs that are facing their biggest expenditure crisis ever; and a picture of an eligibility determination process that is inefficient and inequitable -- one that rations benefits by imposing high application costs on applicants in an arbitrary fashion. I will then argue that the fundamental reason for this bleak picture is the conceptual definition of eligibility that these programs use – one rooted in a disability paradigm that social scientists, people with disabilities, and, to a substantial extent, the public have rejected as being flawed, most emphatically through the passage of the ADA. Current law requires eligibility rules to be based on the premise that disability is medically determinable. That’s wrong because, as the ADA recognizes, a person’s environment matters. I will further argue that programs relying on this eligibility definition must inevitably: reward people if they do not try to help themselves, but not if they do; push the people they serve out of society’s mainstream, fostering a culture of isolation and dependency; relegate many to a lifetime of poverty; and undermine their promise of economic security because of the periodic “reforms” that are necessary to maintain taxpayer support. I conclude by pointing out that to change the conceptual definition for program eligibility, we also must change our whole approach to providing for the economic security of people with disabilities. We need to replace our current “caretaker” approach with one that emphasizes helping people with disabilities help themselves. I will briefly describe features that such a program might require, and point out the most significant challenges we would face in making the transition.

Stock structure of exploited shark species in north-eastern Australia

The project has provided management and other stakeholders with information necessary to make informed decisions about the management of four of the key exploited shark species caught in the Queensland inshore net fishery and northern New South Wales line fishery. The project has determined that spatial management of milk sharks within Queensland, and scalloped hammerhead, common black tip and Australian black tip sharks within Queensland and New South Wales is appropriate. The project has determined that both black tip shark species are likely to require co-operative management arrangements between Queensland and New South Wales. For scalloped hammerheads separate stocks between the two jurisdictions were identified from the fisheriesdependent samples, however genetic exchange across borders is likely to be facilitated by movement of adult females and perhaps larger males to a lesser extent. This information will greatly assist compliance with the Commonwealth Environment Protection and Biodiversity Conservation Act (1999) for shark fisheries in north-eastern Australia by providing the necessary basis for robust assessment of the status of stocks of the study species, thereby helping to deliver their sustainable harvest. It also helps to achieve objectives of the Australian National Shark Plan. The project provides the appropriate spatial framework for future monitoring and assessment of the study species. This is at a time when shark fisheries are receiving close attention from all sectors and when monitoring programs are being implemented, aimed at better assessment of stock status. This project has provided the crucial information for developing an appropriate monitoring design as well as the necessary basis for making statements about stock status. The project has addressed research priorities identified by the Queensland Fisheries Research Advisory Board, Great Barrier Reef Marine Park Authority and Queensland Fisheries. Previously management has assumed a single stock for each species on the east coast of Queensland, and management of shark fisheries in New South Wales (NSW) and Queensland has been independent of one another. The project has been able to enhance and develop links between research, management and industry. Strong positive relationships with commercial fishers were crucial in the collection of samples throughout the study area and fisheries managers were part of the project team throughout the study period. During the project the study area was extended to include both Queensland and NSW waters, creating mutualistic and positive links between the States’ research and management agencies. Extension of project results included management representatives from NSW and Queensland, as well as the Northern Territory where similar shark fisheries operate and similar species are targeted. The project was able to provide significant human capital development opportunities providing considerable value to the project outcomes. Use of vertebral microchemistry and life history characteristics as stock determination methods provided material for two PhD students based at James Cook University: Ron Schroeder, vertebral chemistry; and Alastair Harry, life history characteristic. The project has developed novel research methods that have great capacity for future application, including: • Development of a simple and rapid genetic diagnostic tool (RT-HRM-PCR assay) for differentiating among the black tip shark species, for which no simple morphological identifier exists; and • Development of laser ablation inductively coupled plasma mass spectrometry (LA-ICPMS) methods for analysing and interpreting microchemical composition of shark vertebrae. The study has provided further confirmation of the effectiveness of using a holistic approach in stock structure studies and justifies investment into such studies.

Immigrant Associations in the Metropolitan Area of Finland : Forms of Mobilisation, Participation and Representation

This study examines the role of immigrant associations in the societal and political integration of immigrants into Finnish society. The societal focus is on the ability of immigrant associations to mobilise their ethnic group members to participate in the socio-economic, cultural and political domains of Finnish society and in certain cases even beyond. The political integrative aims are the opportunities of immigrant associations to participate and represent the interests of their ethnic group in local and national policy making. This study focuses on associations in the Metropolitan Area of Finland, (Espoo, Helsinki and Vantaa).The qualitative research consisted of 71 interviews conducted with members of immigrant associations and civil servants. These interviews were mainly semi-structured, including some additional open-ended questions. Additional data consisted of documents, planning reports and of follow-up enquiries. -- In the analysis of the data I categorised thirty-two immigrant associations according to the activity forms and the description of the goals by the members. The four categories consisted of integrative, societal, ethno-cultural and transnational immigrant associations. Most of the immigrant associations belonged to the integrative category (15 of 32 associations). On the one hand the aims of these associations are to provide access for their ethnic group members into Finnish society, while on the other to strengthen the ethnic identity of their members by organising ethno-cultural activities. The societal associations only focused on activities with the objective of including immigrants into the Finnish labour market and educational system. The goal of ethno-cultural associations was to strengthen the ethnic identity of their ethnic group members. The transnational associations aimed at improving the living conditions of women and children in the members' country of origin. The possibilities for immigrant associations to mobilise their members depends partly on external financing. Subsidies have been allocated for societal activities in particular. There remains a risk of the crowding out of ethno-cultural activities: something which has already taken place in several European countries. Immigrant associations aim to strengthen the identity of immigrants mainly by organising social and ethno-cultural activities. Another important target was to provide peer support and therapy courses. Additionally, immigrant women's associations offer assistance to women who have encountered violence by providing counselling and in some cases access to shelter. The data showed that there is an ever growing need to pay heed to the well-being of women, children and elderly immigrants. The participation of immigrant associations in the municipalities' integrative issues takes place mainly through cooperative projects. Until the end of the 1990s there had not been much cooperation. The problem with the projects was that they had mainly been managed by civil servants, whereas members from immigrant associations had remained in a more passive position. Representation of immigrant associations in councils has been fairly weak. Immigrant associations are included in the multicultural councils of Espoo and Vantaa, but only in the planning stages. The municipality of Helsinki does not include immigrant associations due to the large number of organisations which causes problems in finding fair, democratic representation. At the national level, the ‘Advisory Board for Ethnic Relations’ – ETNO didn’t chose its members based on membership of ethnic associations, but based on belongingness to one of the larger language groups spoken by the foreign population in Finland. Since ETNO’s third period (2005-2007), the representatives of immigrant associations and ethnic minority groups have been chosen from proposed candidates. Key words: immigrant associations, integration, mobilisation, participation, representation, the Metropolitan area of Finland, immigrant (women), civil servants

Undervisning i forskningsetik

Abstract (Teaching in research ethics): The aim of this paper is to discuss teaching in research ethics. According to the guidelines issued by the National Advisory Board on Research Ethics in Finland (2002) the units providing researcher training have a duty to include good scientific practice and research ethics in this training. Various kinds of materials are needed in teaching in research ethics. One of them is fiction, which has appeared to be helpful in discussions of ethic problems. A number of examples taken from Finnish and Swedish fiction are discussed by referring to the above mentioned guidelines. The presentation is based on a chiasm, i.e. it goes from good scientific practice to fiction and further from fiction to teaching in research ethics.

Direito à saúde e judicialização de medicamentos: a experiência de Niterói

Este trabalho teve como objetivos conhecer as demandas judiciais relacionadas à obtenção de medicamentos no município de Niterói no ano de 2010 e as estratégias desenvolvidas pela gestão municipal para lidar com este problema. Foi realizado estudo exploratório-descritivo, de abordagem quali-quantitativa, que seguiu dois caminhos metodológicos complementares: (1) levantamento e análise das demandas judiciais para obtenção de medicamentos registrados junto à Superintendência de Assessoria Jurídica da FMS, no período de janeiro a dezembro de 2010; e (2) entrevistas com 11 profissionais, gerentes e gestores envolvidos com os fluxos de atendimento das demandas judiciais no município em questão. Das 123 ações judiciais contra a FMS para obtenção de produtos e procedimentos em saúde em 2010, 98 (80,3%) visavam à obtenção de medicamentos, correspondendo a 342 medicamentos solicitados e 182 fármacos diferentes. destacaram-se, pela frequência nas ações, os seguintes medicamentos: losartana potássica, sinvastatina, ácido acetilsalicílico, furosemida e cloridrato de metformina, utilizados para problemas de saúde de elevada prevalência na população e frequentemente atendidos na atenção básica. Cabe ser assinalado que 48,6% dos medicamentos solicitados faziam parte de algum tipo de lista oficial, indicando possíveis problemas com a gestão da assistência farmacêutica no município. Os relatos dos entrevistados apontaram, entre outros: (a) dificuldades importantes presentes na gestão da Assistência Farmacêutica local, onde convivem o desabastecimento da rede e restrições orçamentárias e financeiras, como elementos que ajudam a agravar a situação estudada; (b) problemas no atendimento dos usuários pela via dos processos administrativos que, criados para facilitar o acesso do usuário aos medicamentos não disponíveis na rede, acabam sendo fontes de ações judiciais; (c) necessidade de maior empenho dos gestores na busca de soluções através de articulações interinstitucionais. O acesso a medicamentos pela via judicial tem contribuído para o desvio de recursos da atenção básica, assim como de outras contas municipais, através das multas e bloqueios determinados pelo Poder Judiciário, em decorrência do não-cumprimento dos mandados judiciais em tempo oportuno. O fenômeno da judicialização de medicamentos é um problema que dificilmente será resolvido em curto espaço de tempo e eventuais abusos que envolvem esse fenômeno devem ser identificados e combatidos de forma rigorosa. Entretanto, o Poder Público, por meio das diversas esferas governamentais, deve proporcionar à população meios eficazes para acesso aos medicamentos necessários e adequados aos pacientes. Apenas dessa maneira será possível reduzir a demanda judicial, sem comprometer o direito constitucional à saúde.

‘Child Care (Amendment) Bill 2009—An attempt to arbitrate on a system’s logic.’

The Child Care (Amendment) Bill was passed by the Seanad on 6th May 2010 and will shortly be enacted as legislation as the Child Care (Amendment) Act, 2010. The Bill, consisting of six Parts amends existing legislation relating to secure or ‘special care’ and makes some further amendments to the Child Care Act, 1991. The Act also provides for the dissolution of the Children Acts Advisory Board, a statutory body established in 2003, whose function was to advise the Minister on policy relating to specialist residential services (specifically Special Care Units) . This article examines the provisions of the Child Care Bill (2009) setting these in the context of current policy and previous legislation. It outlines that while the legislation outlines a detailed process for the application and administration of Special Care Orders, the provisions are weakened by the removal of external oversight mechanisms and the limitations placed on the role of the Guardian ad Litem.

An interview with Manuel Salto-Tellez on diagnostic pathology: the future is morphomolecular

Professor Manuel Salto-Tellez of Queen’s University, Belfast, Northern Ireland is an expert histopathologist and molecular diagnostician. Professor Salto-Tellez is a lead investigator at the Northern Ireland Molecular Pathology Laboratory and also serves as a member of the Editorial Advisory Board for Expert Review of Molecular Diagnostics. In this interview, he proposes directions for the future of molecular pathology and molecular diagnostics, integrating all aspects of pathology toward a common goal.

Regulação política e reconfiguração do perfil profissional do diretor da escola : a opinião dos membros do conselho das escolas

Tese de doutoramento, Educação (Administração e Política Educacional), Universidade de Lisboa, Instituto de Educação, 2015

Article - Chardonnay

An article published by the Wine Advisory Board in California, that discusses the history, culture and process of making Chardonnay.

The Autism Acceptance Project fonds, 2006-2008

The Autism Acceptance Project was established in 2006 by Estee Klar, an art curator, writer and mother to a child labeled autistic. The Project “is dedicated to promoting acceptance of and accommodations for autistic people in society.” TAAP has an autistic advisory board, and is funded by private donations. In 2006, TAAP organized an exhibition, The Joy of Autism: Redefining Ability and Quality of Life. The event displayed the work of a dozen autistic artists, as well as video and other installations which illustrated the burgeoning autistic rights movement and forwarded the concept of Neurodiversity.

Diferencia entre tratamientos en pacientes con angioma cavernoso del tallo cerebral en el instituto nacional de neurología y neurocirugía Manuel Velasco Suárez

Introducción: la historia natural de la hemorragia en el tallo cerebral secundaria a un angioma cavernoso es benigna. Sin embargo, el riesgo de recurrencia y de mayor discapacidad parece incrementarse con el tiempo a pesar del tratamiento recibido; hecho que plantea dudas acerca de si el manejo quirúrgico de estas lesiones ofrece mayor beneficio sobre el manejo médico después del primer evento hemorrágico. El objetivo del estudio fue evaluar el riesgo de resangrado y el grado de discapacidad final en los angiomas cavernosos del tallo cerebral según el tratamiento recibido. Métodos: estudio observacional, analítico tipo cohorte. Se incluyeron pacientes con un primer sangrado en el tallo cerebral secundario a angioma cavernoso que fueron tratados en el Instituto Nacional de Neurología y Neurocirugía (INNN) de Ciudad de México. Resultados: noventa y nueve (99) pacientes fueron incluidos en un periodo de 25 años (1990-2015). Treinta y siete (37) recibieron tratamiento quirúrgico y sesenta y dos (62) recibieron tratamiento médico tras su primer sangrado. El promedio de edad fue de 38 años (DS: 14,17) para el grupo que recibió tratamiento médico y 36 años (DS: 12,82) para los que recibieron tratamiento quirúrgico. La incidencia acumulada de resangrado para el tratamiento médico fue de 5,1 por 100 años/persona y para el tratamiento quirúrgico de 3,9 por 100 años/persona (p = 0,016). Se realizó un análisis estratificado donde no se encontró ninguna asociación entre resangrado y edad o sexo del paciente. Se evaluó la discapacidad final con la escala de Rankin (mRs) sin encontrar diferencias significativas entre tratamientos (p=0.77). Por último, se realizó un modelo explicativo de regresión logística binaria donde se encontró que la edad superior a 55 años (OR: 2.19 IC 95%: 1.67-47,6), el tamaño mayor a 15 mm (OR: 2,5 IC 95%: 3,8-45,9) y la recurrencia del sangrado (OR: 1,7 IC 95%: 1,63-18,7) son factores asociados a un desenlace desfavorable en cuanto a discapacidad final. Discusión y Conclusiones: en los pacientes con angioma cavernoso del tallo cerebral que han presentado un primer evento de sangrado no se encontró una diferencia estadísticamente significativa entre el tratamiento médico o quirúrgico al evaluar la discapacidad funcional con la escala de Rankin modificada, a pesar de evidenciar una diferencia significativa en la incidencia acumulada de resangrado por grupos de tratamiento. El tamaño de la lesión, la recurrencia del sangrado y la edad superior a 55 años son factores asociados a un desenlace desfavorable en este grupo de pacientes.

LaGuardia Insider Newsletter, Spring 1995

- Spring 1995: LaGuardia Community College/CUNY - Editorial Advisory Board for Insider Newsletter: Susan Blandi: Adult and Continuing Education, Stephanie Cooper: Academic Affairs, Randy Fader-Smith: Institutional Advancement, Bill Kelly: Student Affairs,

LaGuardia Insider Newsletter, Spring 1996

- Spring 1996: LaGuardia Community College/CUNY - Editorial Advisory Board for Insider Newsletter: Susan Blandi: Adult and Continuing Education, Stephanie Cooper: Academic Affairs, Randy Fader-Smith: Institutional Advancement, Bill Kelly: Student Affairs,

LaGuardia Insider Newsletter, Winter 1996

- Winter 1996: LaGuardia Community College/CUNY - Editorial Advisory Board for Insider Newsletter: Susan Blandi: Adult and Continuing Education, Stephanie Cooper: Academic Affairs, Randy Fader-Smith: Institutional Advancement, Bill Kelly: Student Affairs,