Moving Toward Medicare Home Health Coverage for Persons with Alzheimer's Disease

ABSTRACT

Medicare home health care policy does not incorporate research evidence of effective palliative home care interventions for Alzheimer's disease and dementia patients and caregivers. This article examines the dissonance between the needs and burdens of Alzheimer's disease patients and caregivers, research results on medical and palliative care interventions, and medicalized public policy in the Medicare home health benefit. The article asserts existing research establishes a prima facie case exists for the federal government to fund a Medicare Palliative Home Care for Alzheimer's disease demonstration project. The article cites the success of the Medicare Hospice Demonstration project and Hospice Medicare Benefit in reducing costs and improving client quality of life as precedent and a model for Alzheimer's disease. Other research implications are identified.     

Accountability and academic freedom: The battle concerning research on cold fusion at Texas A&M university

abstract

The Massachusetts Task Force on Human Subject Research has so far been the only serious attempt to investigate radiation experiments on humans. No other federal, state or private agency has looked at a specific experiment in detail. The President's Advisory Committee on Human Radiation Experiments (ACHRE) provided an overview of the entire nationwide research project, but without a thorough evaluation of any single experiment. The Massachusetts Task Force examined a group of experiments using institutionalized children at two state facilities, the Fernald and Wrentham schools, from 1943 to 1973. The experiments were performed under supervision by scientists at Harvard and MIT, and were funded by several federal agencies. The Task Force found that these experiments were conducted according to the ethical and protocol standard of their day. This did not prevent the Task Force from judging that the experiments violated human rights, and recommending apology and compensation to the victims.     

Why the tolerance of potential harms? Research ethics in Alzheimer disease

This article summarizes the history of presentations to the National Bioethics Advisory Commission (NBAC) by representatives of the Alzheimer's Disease and Related Disorders Association, Inc., on the topic of human subjects research ethics. The interactions between these two bodies presents a useful profile of a public commission and a voluntary association working to clarify issues of great importance to the association's constituency. The context of epidemiology and ongoing research is also briefly presented. The author is a member of the Alzheimer's Disease and Related Disorders Association, Inc., National Ethics Advisory Panel, and in that role presented the Association position before NBAC and at the Friends Research Institute conference.     

Canadian policy on reporting breaches of research integrity: When should Research Ethics Boards be informed?

ABSTRACT

In Canada, institutions that receive research funding from the three federal granting agencies must establish research ethics boards (REBs) to review the ethical acceptability of research involving humans. Institutions are also expected to promote the responsible conduct of research, fostering researchers’ abilities to act with integrity in the conduct of their research. Where a researcher fails to act with integrity in research with humans, institutional policies and procedures of the U15, Canada’s most research-intensive universities, vary in the extent to which they involve their REBs in response to such breaches. Some make no mention of the REB, whereas others state that their REB should be provided with information relating to upheld allegations. In this paper, we argue that when allegations of research integrity breaches are corroborated, the institution’s REB should be identified as a party required to receive that information. Only then can REBs ensure compliance with research ethics standards, which is essential to maintain the public’s trust.     

Toward increased public representation on bioethics committees: Lessons from Judging the cold war human radiation experiments∗

The process of judging the Cold War Human Radiation Experiments illuminates a need to develop a model for an appropriate public role on bioethics committees. A citizen representative was appointed to the President's Advisory Committee on Human Radiation Experiments, and the Committee solicited broad public participation in their investigation. However, many members of the affected and interested public desired further representation on the Committee, as they tended towards stronger ethical condemnations of the experiments than the Committee expressed. I offer an account of a testimony before the Committee by a radiation experiment subject's survivor to illustrate this contrast in moral perspective. I consider some the contributions that “non‐expert”; public members can add to committee deliberations, and suggest that concerns about public representatives may be overcome with the guidance of clearer principles for selecting public members. Further efforts to increase membership by the general and affected public on bioethics committees will enhance deliberations and help realize the democratic ideals of bioethics.     

Trust in Government: Personal Ties that Bind?

Objective . This research note compares the views of the federal government held by federal government workers, their family members, their close friends, and state and local government workers to the views held by other U.S. citizens. Methods . We analyze data from a 2000 survey of Washington, D.C. metropolitan-area residents. Results . Respondents employed at any level of government—not only federal but also state and local—trust the federal government more than respondents with no ties to government. Being the family member or friend of a federal government employee has no impact on trust in government. Conclusions . A confidence gap divides government employees from the rest of the public.     

The role of federal regulations in assuring research integrity

The federal government has a proper interest in research integrity. Regulations have had effects on scientists and institutions; some appear to have been beneficial, such as recent educational efforts; others have augmented bureaucracy and sowed divisiveness. The federal oversight bureaucracy should be subject to the sunset provision.

Participation by the community is essential to the development of effective regulations, but ethical issues should be dealt with by professional standards, not laws. It is argued that the scientific community had begun to respond to public concerns when change was accelerated by regulation, and that change from within is most effective.     

National,independent oversight: Reinforcing the safety net for human subjects research*

National, independent oversight is vital to resolve the problems and inconsistencies in oversight of human subjects research. Three key functions that must be considered in any proposal for such a mechanism are (1) issue spotting, (2) guidance on identified issues, and (3) sampling and follow‐up. The 1998 report and recommendations of the National Bioethics Advisory Commission concerning research involving persons with mental disorders that may affect decisionmaking capacity address these functions in part, but application is limited to a small segment of the research population. Incorporation of these three key functions in a formal, national, independent oversight process is necessary in order to ensure accountability and maintain public trust in research.     

State Variations in Nursing Home Social Worker Qualifications

ABSTRACT

This is the first published account of state administrative code variations in nursing home social worker qualifications. It is important to review state codes because the majority of nursing homes in the U.S. have fewer than 121 beds and therefore are not required by the federal government to employ at least one full-time qualified social worker. States have the option of extending the federal regulations to homes with 120 or fewer beds, or strengthening the federal requirements in other ways. Findings indicate enormous variation in state requirements for qualifications of nursing home social workers, and even when states define a qualified nursing home social worker (not all do), they often exempt facilities from employing one. Seven states were found to be out of federal compliance. Research describing the qualifications of people employed in nursing home social services is called for, as well as research documenting effective psychosocial interventions, especially as they relate to resident quality of life. Ten recommendations for enhancing nursing home social work services are included.     

The development of policy on international student welfare and the question of crisis response

The global market in international education has grown almost without interruption over several decades. Increases in international student enrolments in Australia have been among the most impressive in the world, though they declined between 2010 and 2013. The decline was attributable to exchange rate movements and changes to student visa regulations, though an additional factor lay in reputational fallout from a series of violent physical attacks on Indian students, mostly in 2009. In response, Australian federal and State governments undertook diplomatic trips to India, established a raft of public inquiries to investigate the broader question of international student welfare, and made policy changes. Utilising the literature on public policy “crises”, this paper presents government responses to the 2010–2013 downturn in terms of managing a “long‐shadow crisis” (Boin et al., The Politics of Crisis Management: Public Leadership Under Pressure; Cambrtidge University Press, 2005), which typically emerges quickly but has major political consequences, is only seen to be resolved incrementally, and calls for policy change rather than fine‐tuning in response. The adequacy of the policy response to the crisis is not discussed. The article suggests that the crisis and the response acted to elevate the status of international education as an area of policy in general, though not as a mainstream area of social policy.     

Revisiting demand,politicization and externalization in authoritarian political regimes: policy advisory system in Russian practices

ABSTRACT

This study contributes to debate on three related questions in Policy Advisory System research. Is the Policy Advisory System concept applicable in countries other than developed democracies? How does it function in a state-centred authoritarian regime? How does the authoritarian environment affect tendencies such as “politicization” and “externalization”? These questions are addressed using materials on the current Russian governance structure and advisory practices, focusing on two broadly defined “governance subsystems” in the Presidential Administration of Russia, “Political Bloc” and “Economic Bloc”, both acting as regular customers for advisory communities. One finding is the phenomenon of “Dual Demand” from the same centre of power—“stability” for “Political Bloc” and “innovation” for “Economic Bloc”—which contributed to creation of two different clusters of policy advisory agencies with different statuses. Other findings include transformation of “politicization” to policy control mechanisms and attempted “externalization” turning into the reverse—“internalization”—bringing independent advisory organizations under the supervision of government structures.     

Let’s Rework Our Approach with “Angry Young People”

This commentary by Social Work with Groups Editorial Advisory Board member Dr. Katrina Skewes McFerran is reprinted here with permission under a Creative Commons Attribution. Dr. McFerran, a music therapist, offers a reflection in the aftermath of a mass murder and suicide by a young person in Munich, Germany in July 2016. She states that “many youth services rely on government funding that demands “evidence” in order to justify spending from limited budgets.” She goes on to ask, “How do you prove that by establishing a meaningful connection with an angry young man you have stopped a mass shooting?”     

Practice Evaluation of Community Initiatives for Social Service Delivery in a Deprived Neighborhood in Scotland

ABSTRACT

Improving social service in local communities is a complex undertaking. Over the past few decades, the performance and sustainability of community initiatives have been questioned, while such factors as a lack of funding, insufficient community involvement, unsatisfactory community service, and lack of awareness of the impact of community initiatives have restricted community development. From a case study of community operations in Scotland, this article provides insights into how social service delivery is organized in the absence of public capital. This study utilized data from semi-structured in-depth interviews with a sample of 76 participants from a deprived area in Scotland, including community management team members (n = 6), local residents (n = 52) and community partners (n = 18). The findings illustrated how participants of all ages, local organizations, policy makers, funders and media came together to create a cohesive and responsive community environment. Residents' needs and funders' demands were identified. Results further revealed that a Community Partnership Mechanism helped strengthen the social service network and create flexible social services. Service benefits included improved resident wellbeing in the context of less government intervention. Future implications include suggestions for government and other stakeholders involved in community reform to focus on service recipient skill building and tracking changes between the indicators and service provision.     

Exploring the Relationship Between Trust in Government and the Provision of Social Services in Countries of the Global South: The Case of Palestine

ABSTRACT

Using a data set combining two surveys that were conducted by Birzeit University in Palestine, the study investigates the role that trust in government plays in the provision of social services in Palestine (N= 1,314). The relationship between trust in government and selected sociodemographic characteristics is also explored. Results from the bivariate and regression analyses performed reveal that perceived trust in government is significantly related to government performance and a respondent's gender, income, education, and political affiliation. Implications for practice and future research are discussed.     

Tangible and Spiritual Relief After the Storm

Abstract

This study assessed the types of social services and spiritual messages that were provided by Baton Rouge area churches following Hurricane Katrina. Church representatives (n = 157) completed a 26-item survey which consisted of open and closed ended questions. The most common resources provided by churches included food, clothing, and financial assistance. Nearly 75% of churches attempted to connect evacuees with outside state and federal resources. The greatest unmet needs reported by churches included evacuee shelter and housing, and on-site computer and internet access. Churches recommend preparedness, triage care, and leadership for other churches that find themselves the first responders following a disaster. Because of their responsiveness to the needs of communities, clergy need to be trained in disaster management. Moreover, government monies could be well-spent in supporting faith-based disaster initiatives .     

Concurrent Participation in Federally-Funded Welfare Programs and Empowerment Toward Economic Self-Sufficiency

This research examined the impact of participation in federal means-tested welfare programs on the attainment and maintenance of economic self-sufficiency. Using the Survey of Income and Program Participation (SIPP), this quasi-experimental investigation compartmentalized 4216 low-income households into an intervention group (n?=?2436) and a comparison group (n?=?1780). Households in the intervention group received one or more welfare benefits for the most part of the 2008–2013 quinquennium. By contrast, those in the comparison group – although eligible for these benefits – did not receive them. The survey respondents were measured repeatedly over a 56-month period to assess whether welfare receipt impacts their household income steadily beyond 150% of the federal poverty level, after controlling for known predictors. Multivariate analyses displayed medium effect sizes indicating that participation in public assistance did decrease the likelihood of economic self-sufficiency. Macro-implications of these findings for poverty and social welfare stakeholders were discussed.     

Examining Cost Fulfillment: Child Care Policy and Strategies

ABSTRACT

Most advanced industrialized countries have established social support to aid families in balancing productive and reproductive labor during child-bearing years. Secondary data analysis was used to examine patterns of public support for low-income working families. Key findings highlight four types of policy strategies (Conservative, Limited, Average, and Universal) suggesting differentiated social citizenship opportunities based on place of residence. This research highlights how a complex policy environment contributes to unintended consequences as the working poor are exposed to child care and employment instability. Future research should consider how the policy environment contributes to material well-being in families during the life course.     

A little too much of the buchenwald touch? Military radiation research at the university of Cincinnati, 1960–1972

From 1960 through 1972, Dr. Eugene Saenger oversaw the experimental administration of lethal and near‐lethal doses of radiation to hospital patients at the University of Cincinnati. These experiments were funded by the US Department of Defense, and were specifically designed to acquire military information on the effects of radiation in combat soldiers. Although Saenger's research was terminated after public exposure in 1971, a full and detailed account has not been available until now. The account provided by the President's Advisory Committee on Human Radiation Experiments (ACHRE) in their Final Report of 1995 was incomplete. Our account is based on a reanalysis of all the material available to ACHRE, including highly critical peer reviews by U.C. faculty members. We also present, for the first time, several case histories taken from the medical records of Dr. Saenger's subjects.     

Putting the ‘public’ into public service delivery for social welfare in South Africa

Mubangizi BC, Gray M. Putting the ‘public’ into public service delivery for social welfare in South Africa Int J Soc Welfare 2011: 20: 212–219 © 2010 The Author(s), International Journal of Social Welfare © 2010 Blackwell Publishing Ltd and the International Journal of SocialWelfare. The privatisation of some essential services in South Africa has raised severe difficulties for those for whom the idea of fees for services is quite foreign and who, in any case, cannot afford to pay for services. The government has developed several initiatives to educate people about the need to pay for services provided by local government, the largest of which was the Masakhane fees‐for‐services campaign. This article describes two recent initiatives that seek to engage local citizen participation, namely, Integrated Development Plans and izimbizo (or traditional forums). These are examined along with the challenges faced by local government in promoting citizenship participation in service delivery within a decentralised system of governance. The article concludes with some recommendations on how citizen participation can be enhanced so as to make the ‘public’ visible in public service delivery and thus improve social welfare services.