Conocimiento y uso de los recursos dirigidos a los familiares de personas con discapacidad / Knowledge and Use of Resources for Family Members of Persons with Disabilities

Las políticas sociales buscan relevar a la familia de las personas con discapacidad y dependencia en su papel de cuidadores. Sin embargo, en numerosas ocasiones, estas familias no disponen de todos los recursos necesarios para afrontar estas situaciones de cuidado. El objetivo general del presente trabajo es conocer la percepción sobre los recursos de los que disponen los familiares de personas con discapacidad. Se trata de un estudio cualitativo mediante entrevista estructurada, no experimental ex post facto, de carácter descriptivo y de tipo transversal. La muestra total fueron 27 personas familiares de personas con discapacidad. Para el análisis de las respuestas se empleó el programa JASP y se realizó estadística descriptiva y correlacional. Los resultados indican que el recurso más reconocido y utilizado es el referido a las prestaciones económicas, así como la atención temprana y los colegios de educación especial. Las mujeres son mayoritarias en el cuidado de estas personas, señalando estas mujeres un gasto de energía, por lo que podría ser recomendable mejorar la eficiencia y la eficacia de los programas de respiro familiar. (AU)

Social policies seek to relieve the family of people with disabilities and dependency in their role as caregivers. However, on numerous occasions, these families do not have all the necessary resources to deal with these care situations. The general objective of this study is to find out the perception of the resources available to family members of people with disabilities in Spain. This is a qualitative study using a structured interview, non-experimental ex post facto, descriptive and cross-sectional in nature. The total sample consisted of 27 relatives of people with disabilities. The JASP programme was used to analyse the responses, and descriptive and correlational statistics were performed. The results indicate that the most recognized and used resource is the one referred to economic benefits, as well as early care and special education schools. Women are in the majority in the care of these people, who report an expenditure of energy, so it could be advisable to improve the efficiency and effectiveness of family respite programmes. (AU)

R.A. Fisher, eugenics, and the campaign for family allowances in interwar Britain.

Ronald Aylmer Fisher (1890-1962) is today remembered as a giant of twentieth-century statistics, genetics and evolutionary theory. Alongside his influential scientific contributions, he was also, throughout the interwar years, a prominent figure within Britain's eugenics movement. This essay provides a close examination of his eugenical ideas and activities, focusing particularly upon his energetic advocacy of family allowances, which he hoped would boost eugenic births within the more 'desirable' middle and upper classes. Fisher's proposals, which were grounded in his distinctive explanation for the decay of civilizations throughout human history, enjoyed support from some influential figures in Britain's Eugenics Society and beyond. The ultimate failure of his campaign, though, highlights tensions both between the eugenics and family allowances movements, and within the eugenics movement itself. I show how these social and political movements represented a crucial but heretofore overlooked context for the reception of Fisher's evolutionary masterwork of 1930, The Genetical Theory of Natural Selection, with its notorious closing chapters on the causes and cures of national and racial decline.

Longitudinal Understanding of Child Maltreatment Report Risks.

BACKGROUND: Child maltreatment reports (CMR) are both common and strongly associated with various negative outcomes. OBJECTIVE: To examine CMR risks by child age, early childhood context, current/cumulative economic status (welfare receipt), race, and other risk factors with a longitudinal dataset. PARTICIPANTS AND SETTING: The CAN sample included 2,111 children having a CMR ≤ age 3, suggestive of a harmful early childhood context. The AFDC sample included 1,923 children having AFDC but no CMR ≤ age 3, suggestive of early childhood protective factors despite poverty. METHODS: We estimated the CMR likelihood at each age from 1-17 years based on various risk factors while following up children from 1995-2009. RESULTS: During follow-up, CMR likelihoods were substantially higher for the CAN sample than for the AFDC sample. The age-CMR relationship was strongly negative for the CAN sample (OR = 0.87, 95% CI = 0.86-0.88). This relationship was weaker for the AFDC sample (OR = 0.92, 0.89-0.95) and became non-significant for children who exited welfare. Current welfare receipt remained a strong predictor of CMR likelihoods for both CAN (OR = 2.32, 1.98-2.71) and AFDC (OR = 2.08, 1.61-2.68) samples. Prior welfare receipt moderately increased CMR likelihoods among those not currently on welfare. Controlling for other risk factors, White children had the highest likelihood of CMR. Other child and parent level vulnerabilities also increased CMR risk over time. CONCLUSIONS: This study highlights the importance of longitudinal analytic approaches and the utility of cross-sector administrative data in improving our ability to understand and predict CMRs over time.

Evaluation of a savings-led family-based economic empowerment intervention for AIDS-affected adolescents in Uganda: A four-year follow-up on efficacy and cost-effectiveness.

BACKGROUND: Children who have lost a parent to HIV/AIDS, known as AIDS orphans, face multiple stressors affecting their health and development. Family economic empowerment (FEE) interventions have the potential to improve these outcomes and mitigate the risks they face. We present efficacy and cost-effectiveness analyses of the Bridges study, a savings-led FEE intervention among AIDS-orphaned adolescents in Uganda at four-year follow-up. METHODS: Intent-to-treat analyses using multilevel models compared the effects of two savings-led treatment arms: Bridges (1:1 matched incentive) and BridgesPLUS (2:1 matched incentive) to a usual care control group on the following outcomes: self-rated health, sexual health, and mental health functioning. Total per-participant costs for each arm were calculated using the treatment-on-the-treated sample. Intervention effects and per-participant costs were used to calculate incremental cost-effectiveness ratios (ICERs). FINDINGS: Among 1,383 participants, 55% were female, 20% were double orphans. Mean age was 12 years at baseline. At 48-months, BridgesPLUS significantly improved self-rated health, (0.25, 95% CI 0.06, 0.43), HIV knowledge (0.21, 95% CI 0.01, 0.41), self-concept (0.26, 95% CI 0.09, 0.44), and self-efficacy (0.26, 95% CI 0.09, 0.43) and lowered hopelessness (-0.28, 95% CI -0.43, -0.12); whereas Bridges improved self-rated health (0.26, 95% CI 0.08, 0.43) and HIV knowledge (0.22, 95% CI 0.05, 0.39). ICERs ranged from $224 for hopelessness to $298 for HIV knowledge per 0.2 standard deviation change. CONCLUSIONS: Most intervention effects were sustained in both treatment arms at two years post-intervention. Higher matching incentives yielded a significant and lasting effect on a greater number of outcomes among adolescents compared to lower matching incentives at a similar incremental cost per unit effect. These findings contribute to the evidence supporting the incorporation of FEE interventions within national social protection frameworks.

A vivência da familia no cuidado domiciliar à criança com necessidades especiais de saúde / Family experience in household care for children with special needs of health / La vivencia de la familia en el cuidado domiciliar al niño con necesidades especiales de salud

RESUMO Objetivo: Analisar a vivência da família no cuidado domiciliar às crianças com necessidades especiais de saúde (CRIANES). Material e método: Trata-se de um estudo qualitativo, onde foram analisados 134 prontuários em uma instituição filantrópica em um município de Minas Gerais e realizadas dez entrevistas semi-estruturadas com famílias de CRIANES. A análise dos dados foi realizada por meio da análise de conteúdo proposta por Bar-din. Resultados: Os resultados sinalizam a complexidade presente nos cuidados realizados com a CRIANES e foi possível identificar uma sobrecarga do cuidador principal. Conclusão: Evidencia-se a importância da efetivação de políticas públicas para esse grupo infantil e a necessidade de uma consolidação da rede social e de apoio para favorecer o acesso e utilização oportuna aos serviços e para melhorias na qualidade de vida das CRIANES e suas famílias.

ABSTRACT Objective: The objective of the research is to analyze the family's experience with home care for children with special health needs (CRIANES). Method: This is a qualitative study, which analyzed 134 records at a philan thropic institution in a district of Minas Gerais and ten semi-structured interviews were performed to fam ilies of children with special health needs. Data analysis was performed using the content analysis proposed by Bardin. Results: The results indicate the complexity underlying the care provided to children with special health needs and it was also possible to identify an overload that falls on the primary caregiver. Conclusion: The importance of effective implementation of public policies for this group of children is evident and the need for the strengthening of the social and support networks to facilitate access and timely use of the services in order to improve the quality of life of the children with special health needs and their families.

RESUMEN Objetivo: Analizar la vivencia de la familia en el cuidado domiciliar a los niños con necesidades especiales de salud. Método: Se trata de un estudio cualitativo, donde se analizaron 134 registros en una institución filan trópica en un municipio de Minas Gerais y se realizaron diez entrevistas con familias de niños con necesidades especiales de salud. El análisis de los datos fue realizado por medio del análisis de contenido propuesto por Bardin. Resultados: Los resultados señalan la complejidad presente en los cuidados realizados con los niños con necesidades especiales de salud y fue posible identificar una sobrecarga del cuidador principal. Conclusión: Se evidencia la importancia de la aplicación efectiva de políticas públicas para ese grupo de niños y la necesidad de una consolidación de la red social y de apoyo para favorecer el acceso y utilización oportuna de los servicios y para mejoras en la calidad de vida de los niños y sus familias.

Duration in Poverty-Related Programs and Number of Child Maltreatment Reports.

This study examined the relationship of a family's duration in poverty-related programs (i.e., Aid to Families with Dependent Children/Temporary Assistance for Needy Families and Medicaid) to the subject child's number of maltreatment reports while considering race and baseline neighborhood poverty. Children from a large Midwestern metropolitan area were followed through a linked cross-sector administrative database from birth to age 15. Generalized multilevel models were employed to account for the multilevel structure of the data (i.e., nesting of families within neighborhoods). The data showed a unique and significant contribution of duration in poverty-related programs to the number of maltreatment reports. The predicted number of maltreatment reports increased by between 2.5 and 3.7 times, as duration in poverty-related programs increased from 0 to 9 years. This relationship was consistent between Whites and non-Whites (over 98% Black), but non-Whites showed a significantly lower number of total maltreatment reports while controlling for duration in poverty-related programs. We were unable to find a significant association between child maltreatment reports and baseline neighborhood poverty.

Noises of the work process and welcoming the family in psychosocial care on alcohol and other drugs / Ruídos do processo de trabalho e o acolhimento da família na atenção psicossocial em álcool e outras drogas / Ruidos del proceso de trabajo y la acogida de la familia en la atención psicossocial en alcohol y otras drogas

This is a qualitative and exploratory study aiming to present noises found in the work process of a Psychosocial Care Center on Alcohol and other Drugs, and possibilities for effective welcoming the family in this service. Data collection was conducted through semi-structured interviews with eight professionals. Data analysis was performed by Content Analysis according to Bardin and the discussion was based on the theoretical perspective of Merhy. The results showed noises produced in the work process and their interfaces with the families welcoming. More specifically, they revealed excessive demand for care, professional unpreparedness, welcoming focused on dependency, difficulties for interdisciplinary work and the absence of an effective network. This study concluded that expansion of bonds, territorialization, articulation with support groups and flexibility of family groups are possible ways for welcoming the families.

Pesquisa qualitativa, exploratória, objetivando apresentar ruídos encontrados no processo de trabalho de um Centro de Atenção Psicossocial em Álcool e outras Drogas, e possibilidades para o acolhimento efetivo da família neste serviço. A coleta dos dados foi realizada através de entrevista semiestruturada com oito profissionais. A análise dos dados foi realizada através da Análise de Conteúdo na perspectiva de Bardin e a discussão foi fundamentada na perspectiva teórica de Merhy. Os resultados evidenciaram ruídos produzidos no processo de trabalho e suas interfaces com o acolhimento aos familiares. Mais especificamente, revelaram demanda excessiva de atendimento, despreparo dos profissionais, acolhimento focado na dependência, dificuldades para o trabalho interdisciplinar e ausência de uma rede efetiva. Este estudo concluiu que ampliação dos vínculos, territorialização, articulação com grupos de apoio e flexibilidade dos grupos familiares , são possíveis caminhos para o acolhimento das famílias.

Investigación cualitativa, exploratoria, objetivando presentar ruidos encontrados en el proceso de trabajo de un Centro de Atención Psicossocial en Alcohol y otras Drogas, y posibilidades para la acogida efectiva de la familia en este servicio. La colecta de los datos fue realizada a través de entrevista semiestruturada con ocho profesionales. El análisis de los datos fue realizado a través del Análisis de Contenido en la perspectiva de Bardin y la discusión fue fundamentada en la perspectiva teorética de Merhy. Los resultados evidenciaron ruidos producidos en el proceso de trabajo y sus interfaces con la acogida a los familiares. Más específicamente, revelaron demanda excesiva de servicio, falta de preparación de los profesionales, acogida focada en la dependencia, dificultades para el trabajo interdisciplinar y ausencia de una red efectiva. Este estudio concluyó que la ampliación de los vínculos, territorialización, articulación con grupos de apoyo y flexibilidad de los grupos familiares, son posibles caminos para la acogida de las familias.

The Effects of Collateral Consequences of Criminal Involvement on Employment, Use of Temporary Assistance for Needy Families, and Health.

Criminal convictions are often associated with collateral consequences that limit access to the forms of employment and social services on which disadvantaged women most frequently rely--regardless of the severity of the offense. These consequences may play an important role in perpetuating health disparities by socioeconomic status and gender. We examined the extent to which research studies to date have assessed whether a criminal conviction might influence women's health by limiting access to Temporary Assistance for Needy Families (TANF) and employment, as a secondary, or "collateral" criminal conviction-related consequence. We reviewed 434 peer-reviewed journal articles retrieved from three electronic article databases and 197 research reports from three research organizations. Two reviewers independently extracted data from each eligible article or report using a standardized coding scheme. Of the sixteen eligible studies included in the review, most were descriptive. None explored whether receiving TANF modified health outcomes, despite its potential to do so. Researchers to date have not fully examined the causal pathways that could link employment, receiving TANF, and health, especially for disadvantaged women. Future research is needed to address this gap and to understand better the potential consequences of the criminal justice system involvement on the health of this vulnerable population.

More money, fewer lives: the cost effectiveness of welfare reform in the United States.

OBJECTIVES: We evaluated the economic benefits of Temporary Assistance to Needy Families (TANF) relative to the previous program, Aid to Families with Dependent Children (AFDC). METHODS: We used pooled mortality hazard ratios from 2 randomized controlled trials-Connecticut Jobs First and the Florida Transition Program, which had follow-up from the early and mid-1990s through December 2011-and previous estimates of health and economic benefits of TANF and AFDC. We entered them into a Markov model to evaluate TANF's economic benefits relative to AFDC and weigh them against the potential health threats of TANF. RESULTS: Over the working life of the average cash assistance recipient, AFDC would cost approximately $28000 more than TANF from the societal perspective. However, it would also bring 0.44 additional years of life. The incremental cost effectiveness of AFDC would be approximately $64000 per life-year saved relative to TANF. CONCLUSIONS: AFDC may provide more value as a health investment than TANF. Additional attention given to the neediest US families denied cash assistance could improve the value of TANF.

Impact of welfare reform on mortality: an evaluation of the Connecticut jobs first program, a randomized controlled trial.

OBJECTIVES: We examined whether Jobs First, a multicenter randomized trial of a welfare reform program conducted in Connecticut, demonstrated increases in employment, income, and health insurance relative to traditional welfare (Aid to Families with Dependent Children). We also investigated if higher earnings and employment improved mortality of the participants. METHODS: We revisited the Jobs First randomized trial, successfully linking 4612 participant identifiers to 15 years of prospective mortality follow-up data through 2010, producing 240 deaths. The analysis was powered to detect a 20% change in mortality hazards. RESULTS: Significant employment and income benefits were realized among Jobs First recipients relative to traditional welfare recipients, particularly for the most disadvantaged groups. However, although none of these reached statistical significance, all participants in Jobs First (overall, across centers, and all subgroups) experienced higher mortality hazards than traditional welfare recipients. CONCLUSIONS: Increases in income and employment produced by Jobs First relative to traditional welfare improved socioeconomic status but did not improve survival.

Processos de exclusão social e iniquidades em saúde: um estudo de caso a partir do Programa Bolsa Família, Brasil / Social exclusion and health inequity: a case study based on a cash distribution program (Bolsa Família) in Brazil

OBJETIVO: Compreender as repercussões do Programa Bolsa Família (PBF) e analisar seus efeitos nos processos de inclusão e exclusão social vividos pelas famílias pobres no Brasil, em especial sua potencialidade para enfrentar iniquidades em saúde. MÉTODOS: A investigação de abordagem qualitativa empregou a metodologia de estudo de caso com utilização das técnicas de observação participante, pesquisa documental e entrevistas semiestruturadas com famílias beneficiárias e ex-beneficiárias do PBF, além de gestores municipais. O estudo foi conduzido em um município de pequeno porte do estado do Rio de Janeiro, com elevado índice de exclusão social e cobertura de 100% da Estratégia Saúde da Família (ESF).A abordagem dosprocessos deinclusão e exclusão socialem suas dimensões econômica, social, política e cultural foi utilizada para orientar a coleta e análise dos dados. RESULTADOS: O programa favoreceu a inclusão social das famílias pobres, especialmente nas dimensões econômica e social, apesar de não promover as mudanças reivindicadas pelos beneficiários na esfera do trabalho. Os efeitos na dimensão política foram limitados pelo funcionamento inadequado das instâncias de participação social. Os entrevistados destacaram os efeitos positivos da ESF relacionados ao usufruto do direito à saúde, em particular a ampliação do acesso e utilização de serviços de saúde de atenção primária. No entanto, esses efeitos mostraram-se desvinculados do PBF. CONCLUSÕES: O trabalho aponta efeitos, limites e desafios do PBF para modificar os determinantes sociais produtores de iniquidades da saúde, a fim de que se alterem, de modo mais permanente, as dinâmicas de exclusão/inclusão social de famílias vivendo em situação de pobreza.

OBJECTIVE: To understand the impact of Bolsa Família (PBF), a federal cash transfer program, and to analyze its effects on social inclusion and exclusion processes experienced by low-income families in Brazil, with a focus on the program's potential to help overcome health inequity. METHODS: This qualitative investigation used a case study methodology including observant participation, review of documents, and semi-structured interviews with current and former PBF beneficiaries, as well as with the program's local managers. The study was conducted in a small city in the state of Rio de Janeiro with a high social exclusion index and 100% coverage by the Family Health Strategy (Estratégia Saúde da Família, ESF) program. The economic, political, social, and cultural dimensions of social exclusion and inclusion processes were used to guide data collection and analysis. RESULTS: The program facilitated social inclusion of low-income families, especially in the economic and social dimensions. Nevertheless, it did not produce the changes desired by the beneficiaries in the work dimension. The effects on the political dimension were limited by the insufficient social engagement of the PBF. The interviewees underscored the positive effects of the ESF, which allowed them to exercise their right to health by granting them wider access to primary health care services. However, these effects appeared to be unrelated to the PBF. CONCLUSIONS: The results reveal effects, limitations, and challenges of the PBF towards modifying the social determinants of health inequity, in order to promote more effective changes in the social exclusion/inclusion dynamics affecting low-income families.

Prevalence, characteristics, and poverty status of Supplemental Security Income multirecipients.

"Multirecipients" are people who receive Supplemental Security Income (SSI) payments while living with other recipients (not including an SSI-eligible spouse). Using Social Security Administration records matched to Current Population Survey data for 2005, this article examines multirecipients' personal, family, household, and economic characteristics. I find that no more than 20 percent of the 2005 SSI population were multirecipients. Most multirecipients were adults, lived with one other recipient, and/or shared their homes with related recipients. Multirecipients were generally less likely to be poor than SSI recipients as a whole; but those who were children, lived with one other recipient, and/or shared their homes with a nonrecipient were more likely to be poor. Implementing sliding-scale SSI benefit reductions for children in multirecipient households would affect about 23 percent of multirecipients, or about 5 percent of all SSI recipients.

Child allowances, fertility, and chaotic dynamics.

This paper analyzes the dynamics in an overlapping generations model with the provision of child allowances. Fertility is an increasing function of child allowances and there exists a threshold effect of the marginal effect of child allowances on fertility. We show that if the effectiveness of child allowances is sufficiently high, an intermediate-sized tax rate will be enough to generate chaotic dynamics. Besides, a decrease in the inter-temporal elasticity of substitution will prevent the occurrence of irregular cycles.

Welfare programs that target workforce participation may negatively affect mortality.

During the 1990s reforms to the US welfare system introduced new time limits on people's eligibility to receive public assistance. These limits were developed to encourage welfare recipients to seek employment. Little is known about how such social policy programs may have affected participants' health. We explored whether the Florida Family Transition Program randomized trial, a welfare reform experiment, led to long-term changes in mortality among participants. The Florida program included a 24-36-month time limit for welfare participation, intensive job training, and placement assistance. We linked 3,224 participants from the experiment to 17-18 years of prospective mortality follow-up data and found that participants in the program experienced a 16 percent higher mortality rate than recipients of traditional welfare. If our results are generalizable to national welfare reform efforts, they raise questions about whether the cost savings associated with welfare reform justify the additional loss of life.

[Social exclusion and health inequity: a case study based on a cash distribution program (Bolsa Família) in Brazil]. / Processos de exclusão social e iniquidades em saúde: um estudo de caso a partir do Programa Bolsa Família, Brasil.

OBJECTIVE: To understand the impact of Bolsa Família (PBF), a federal cash transfer program, and to analyze its effects on social inclusion and exclusion processes experienced by low-income families in Brazil, with a focus on the program's potential to help overcome health inequity. METHODS: This qualitative investigation used a case study methodology including observant participation, review of documents, and semi-structured interviews with current and former PBF beneficiaries, as well as with the program's local managers. The study was conducted in a small city in the state of Rio de Janeiro with a high social exclusion index and 100% coverage by the Family Health Strategy (Estratégia Saúde da Família, ESF) program. The economic, political, social, and cultural dimensions of social exclusion and inclusion processes were used to guide data collection and analysis. RESULTS: The program facilitated social inclusion of low-income families, especially in the economic and social dimensions. Nevertheless, it did not produce the changes desired by the beneficiaries in the work dimension. The effects on the political dimension were limited by the insufficient social engagement of the PBF. The interviewees underscored the positive effects of the ESF, which allowed them to exercise their right to health by granting them wider access to primary health care services. However, these effects appeared to be unrelated to the PBF. CONCLUSIONS: The results reveal effects, limitations, and challenges of the PBF towards modifying the social determinants of health inequity, in order to promote more effective changes in the social exclusion/inclusion dynamics affecting low-income families.

Electronic access to food and cash benefits.

The authors' purpose was to examine access to Family Independence Program and Food benefits in relation to customer service and an automated helpline. In addition, participants identified impediments and limitations to the receipt of services. Two hundred forty-four surveys were mailed to recipients of over-the-counter electronic benefit transfer cards; 58 were returned. The findings indicate that when customers (age 21-92) received assistance navigating the electronic benefits transfer system from local office staff, they were able to obtain benefits successfully. Negative credit/debit card history and touchtone phones were related to difficulty using the system. The results suggest that the local office and the contracted service provider (automatic helpline) need to provide assistance that promotes greater autonomy for the customer to make successful transitions to benefits that are delivered electronically.