Punishing Children for Caring: The Hidden Cost of Young Carers

SUMMARY. This paper examines the lives, experiences and needs of children who care - those children under the age of 18 who provide primary care for a sick, disabled or elderly adult in the home. It presents data from a recent study into the lives of these children, their responsibilities, their commitments, their pain and their fears. It paints a picture of neglect both by professionals paid to care as well as by other family members. It suggests that child carers are effectively punished for caring. The paper goes on to examine the implications for child carers of the Community Care Act, finally implemented on 1 April 1993, to raise a number of critical questions about the rights of children who care, and to suggest a number of innovative ways forward, based upon the expressed needs of young carers.     

Long-term care of the disabled elderly: do children increase caregiving by spouses?

Do adult children affect the care elderly parents provide each other? We develop two models in which the anticipated behavior of adult children provides incentives for nondisabled elderly parents to increase care for their disabled spouses. The “demonstration effect” postulates that adult children learn from a parent’s example that family caregiving is appropriate behavior. The “punishment effect” postulates that adult children may punish parents who fail to provide spousal care by not providing future care for the nondisabled spouse if and when necessary. Thus, joint children act as a commitment mechanism, increasing the probability that elderly parents will provide care for their disabled spouses. We argue that stepchildren provide weaker incentives for spousal care because the attachment of a stepchild to a stepparent is likely to be weaker than the attachment of children to parents in a traditional nuclear family. Using data from the HRS, we find evidence consistent with the hypothesis that joint children provide stronger incentives than stepchildren for nondisabled elderly parents to provide care for their disabled spouse.     

Economic and Psychological Benefits from Employment: the experiences and perspectives of mothers of disabled children

This qualitative research explores the perspectives and experiences of employed mothers of disabled children particularly with respect to the potential benefits of employment. Forty families with at least one disabled child, representing a variety of family structures and work situations, participated in semi-structured interviews. The findings of this study clearly illustrate that the economic, psychological and social benefits for mothers of disabled children from participation in paid work are strikingly similar to those for employed mothers of non-disabled children. This suggests that the low level of labour force participation of mothers of disabled children in comparison with other mothers is most likely a consequence of the inherent ideological and structural barriers these women face, rather than their qualitatively differing needs. Streamlining of the benefits system, integration both within and between health, education and social services, increased flexibility in the workplace, and dialogue and co-ordination between all of these elements, may go some way to providing the support these mothers need.     

Elderly Korean immigrants' socially and culturally constructed definitions of elder neglect

Little research has been conducted among the elderly on the topic of neglect. Not only is there a paucity of research, but also there is the problem of widely varying definitions of neglect. These two challenges led to a study of how neglect is understood by elderly Korean immigrants as it pertains to behaviors of adult children and family members. Interviews with 124 elderly Korean immigrants were conducted to assess conceptualizations of elder neglect. Data were analyzed using a grounded theory approach. Results revealed five interrelated themes with strong connections to dimensions of health and mental health: (a) culture-specific definitions of elder neglect, (b) contexts in which elder neglect occurs, (c) impact of neglect on elders, (d) expectations from adult children, and (e) strategies for dealing with elder neglect. Implications for culturally competent, family-centered service delivery to elderly Korean immigrants are discussed, specifically focusing on service provision of health and mental health care.     

International job search: Mexicans in and out of the US

It is argued that migration from Mexico to the US and return migration are determined by international wage differentials and preferences for origin. We use a model of job search, savings and migration to show that job turnover is a crucial determinant of the migration process. We estimate this model by Simulated Method of Moments (SMM) and find that migration practically disappears, it goes down from 19 to 0.5%, had Mexico US arrival rates while employed. A lower decrease in migration, to 7%, occurs by an increase in Mexican wage offers. On the other hand, doubling migration costs reduces migration rates from 19 to 5%, while subsidizing return migration in $300 reduces migration rates only to 14%.     

Complex Families and Late‐Life Outcomes Among Elderly Persons: Disability,Institutionalization, and Longevity

The authors examined the effects of marital status and family structure on disability, institutionalization, and longevity for a nationally representative sample of elderly persons using Gompertz duration models applied to longitudinal data from 3 cohorts of the Health and Retirement Study (N = 11,481). They found that parents with only stepchildren have worse outcomes than parents with only biological children. Elderly mothers with only stepchildren become disabled and institutionalized sooner, and elderly men with only stepchildren have shorter longevity relative to their counterparts with only biological children. The effect of membership in a blended family differs by gender. Relative to those with only biological children, women in blended families have greater longevity and become disabled later, whereas men in blended families have reduced longevity. The findings indicate that changing marital patterns and increased complexity in family life have adverse effects on late‐life health outcomes.     

Willingness and availability: Explaining new attitudes toward institutional elder care among Chinese elderly parents and their adult children

This paper studies the attitudes of Chinese elderly parents and their family members toward institutional elder care. Based on a sample survey of 265 elderly residents in 67 elder home institutions and 114 family members, this study finds that elders and family members generally had high evaluations of institutions' quality in terms of facility, medical, and direct care conditions. Elders who reported improved health and emotional well-being after entering institutions gave higher ratings to those institutions' quality. Among adult children, those who had more siblings tended to rate institutions higher than those who had fewer siblings. Factors that influenced elders' willingness to stay in an institution included marital status and financial ability. Widowed elders were more willing to stay in institutions compared with married counterparts. Elders who rated service charge very high preferred to stay at home due to the high cost of institutional care. In the family relatives' sample, gender was found to be related to willingness to place elderly parents in an institution; female children were less willing to place elderly parents in the institution.     

Client satisfaction with live-in and live-out home care workers in Israel

In an era of globalization where the migration of longterm care workers is common, foreign live-in home care workers can compensate for the unavailability of family members and, perhaps, even substitute for institutional care in the provision of long-term care services to disabled older persons. This study examines differences in home care satisfaction between disabled older persons in Israel with "live-in" home care workers and those with "live-out" workers, and explores some differences in sociodemographic and personal characteristics between these two groups. Face-to-face interviews were held with a random sample of 93 older persons in Beer-Sheva. Older persons with live-in home care workers were more satisfied with their home care service than those with live-out workers. Those with live-in workers were more severely disabled, tended not to have any children living in close proximity, although an adult child was available as an informal caregiver. Communication difficulties between the elderly persons and their home care workers were found not to affect negatively the satisfaction with the service.     

‘It's afforded us a huge flexibility’: the impact of ‘Disabled Children's Access to Childcare Pilots’ on families with a disabled child in England

For many parents of disabled children, finding affordable and suitable childcare that meets their needs is very challenging. Research in the UK has shown that parents with disabled children experience barriers not just with cost, but also accessibility, the attitudes of childcare providers and in getting good information about sources of childcare. The Disabled Children's Access to Childcare (DCATCH) pilots was an initiative designed to improve access to childcare for disabled children in England. As part of an evaluation of DCATCH, qualitative interviews were carried out with 38 members of 22 families who had received support from the initiative. All of the families reported positive outcomes and highlighted: a beneficial impact on the parents' capacity to work; enjoyable experiences for the disabled child; increased confidence and independence for both parents and children; and the creation of time for parents to pursue other activities. The results of the DCATCH initiative support other research which argues that whilst cost is a significant factor around childcare choices for families with a disabled child, having confidence in the childcare provider's ability to meet specific needs (including complex health care needs) and providing positive experiences for the disabled child are also key, determining factors.     

At home or away? An exploration of policy and practice in the placement of disabled children at residential schools

Despite increasing policy commitment by government to the inclusion of children with special educational needs in mainstream services, significant numbers of disabled children continue to be placed away from their family home and community in residential schools. Reliable statistical information on them is elusive and there has been a dearth of research on how placement decisions are made and what the experience of such placements for disabled children and their families is like. This article reports on the policies and practice of 21 education and social service authorities in England in this area, the patterns of residential placements and the apparent reasons for them. It also highlights points of concern in relation to the protection and promotion of the welfare of disabled children in residential schools, and the apparent lack of clarity on the part of local authorities with regard to their duties in this area. Copyright © 2002 John Wiley & Sons, Ltd.     

Child Aware Practice in Adult Social Services: A Scoping Review

The development of “child aware” practice is about the capacity and capability of adult health and social service providers to identify and respond to the needs of children. A scoping review of the literature considered five adult adversities associated with family stress and reduced parenting capacity: mental illness, alcohol and substance abuse, homelessness, intellectual disability, and domestic violence. Although there are specific needs for children pertaining to particular adversities, there was substantial commonality of potential effects. These included emotional and psychological difficulties, physical and mental health problems, academic difficulties, language delays, peer difficulties, stigma, trauma reactions, loss and grief, instability, and social exclusion. How children react to difficulties in their family depends upon various protective factors, a child's frame of reference, and other dynamics within the family that can offset risks. The findings aim to inform policy, program development, and practice in adult social services, enhancing their responsiveness to children.     

The Long-Term Care Insurance Law in Israel: Present and Future

Aging in place is a core component of the policy on aging in Israel. This was well expressed in the Long-Term Care Insurance law enacted in 1986 and implemented in 1988. Under the law, disabled persons can receive in-kind home- and community-based services to enable frail older adults to age in place and to complement or supplement the care provided primarily by family caregivers who are legally responsible for caregiving of their elderly family members. This article presents the main principles of the law and reviews the amendments that this law has undergone during the past 22 years. Finally, some core issues and dilemmas are discussed.     

The long-term care insurance law in Israel: present and future

Aging in place is a core component of the policy on aging in Israel. This was well expressed in the Long-Term Care Insurance law enacted in 1986 and implemented in 1988. Under the law, disabled persons can receive in-kind home- and community-based services to enable frail older adults to age in place and to complement or supplement the care provided primarily by family caregivers who are legally responsible for caregiving of their elderly family members. This article presents the main principles of the law and reviews the amendments that this law has undergone during the past 22 years. Finally, some core issues and dilemmas are discussed.     

Client Satisfaction with Live-In and Live-Out Home Care Workers in Israel

Abstract

In an era of globalization where the migration of long-term care workers is common, foreign live-in home care workers can compensate for the unavailability of family members and, perhaps, even substitute for institutional care in the provision of long-term care services to disabled older persons.

This study examines differences in home care satisfaction between disabled older persons in Israel with “live-in” home care workers and those with “live-out” workers, and explores some differences in socio-demographic and personal characteristics between these two groups. Face-to-face interviews were held with a random sample of 93 older persons in Beer-Sheva.

Older persons with live-in home care workers were more satisfied with their home care service than those with live-out workers. Those with live-in workers were more severely disabled, tended not to have any children living in close proximity, although an adult child was available as an informal caregiver. Communication difficulties between the elderly persons and their home care workers were found not to affect negatively the satisfaction with the service.     

The health status of elderly people and the new direction of health services

The projected increase of people in Japan aged 75 years and older in the years to come implies the increase of the disabled elderly. Thus, the core of societal preparation for the aging of the population is generally considered to be the expansion of services for the disabled elderly. However, gerontological studies on the health status of the elderly conducted in Japan show that the prevalence of disability is quite low and even decreasing. Relative to the services for the disabled elderly, preventive services for the healthy elderly have long been overlooked. In 1994, the Metropolitan Tokyo Government organized a task force to develop a new health education program as the preventive health service for the healthy urban elderly. A preliminary plan outlining the health education program--consisting of propagation with a booklet, on-the-job training of practitioners, and development of new curricula and teaching materials--was proposed by the authors for discussion within the task force. Although the inquiry has just begun and the plan is still nascent, it seems adequate to fit the needs for preventive health services in the near future.     

残疾儿童心理健康内涵及结构初探

心理健康是儿童生活和健康成长的保障,相较于普通儿童,在某些方面具有障碍或缺陷的残疾儿童更容易出现情绪和行为问题,其心理健康状况堪忧,迫切需要得到更多的关注和有效的干预.本文基于心理健康的概念和标准,结合残疾儿童的身心发展特点,厘清了残疾儿童心理健康的内涵,其实质是努力达成残疾儿童与外界环境的适度平衡和内心的和谐,即良好的社会适应.在此基础上,从社会适应心理机能的活动领域和特质内容两个维度入手,初步构建出残疾儿童心理健康的五领域(自我意识、人际交往、学习适应、生活适应、社会支持)与三内容(认知、情绪情感、意志行为)相交叉的二维结构模型,为进一步开展残疾儿童心理健康教育的实践工作奠定理论基础.     

The Health Status of Elderly People and the New Direction of Health Services

The projected increase of people in Japan aged 75 years and older in the years to come implies the increase of the disabled elderly. Thus, the core of societal preparation for the aging of the population is generally considered to be the expansion of services for the disabled elderly. However, gerontological studies on the health status of the elderly conducted in Japan show that the prevalence of disability is quite low and even decreasing. Relative to the services for the disabled elderly, preventive services for the healthy elderly have long been overlooked. In 1994, the Metropolitan Tokyo Government organized a task force to develop a new health education program as the preventive health service for the healthy urban elderly. A preliminary plan outlining the health education program consisting of propagation with a booklet, on-the-job training of practitioners, and development of new curricula and teaching materials was proposed by the authors for discussion within the task force. Although the inquiry has just begun and the plan is still nascent, it seems adequate to fit the needs for preventive health services in the near future.     

Gradual Retirement in Germany

While nearly all developed nations have some form of attendance allowance for the elderly and disabled, the United Kingdom and several of the American states have provisions to pay caregivers directly if they are family members. This paper compares and contrasts provisions in the U.K. Invalid Care Allowance with provisions of a program in one American state-Michigan. Such payments potentially benefit disabled people, caregivers, and cost-conscious states. However, two particular goals shape the programs' impacts on caregiver functioning and adequacy. One is the extent to which programs operate as welfare provisions and benefits directed at the social or household economy. The other is the extent to which they function as a substitute for wage labor in the market economy. Each of these can be assessed in relation to the real, personal choices and economic gains it provides caregivers. Presumably, both are important in sustaining adequate and satisfying long-term care. Only by truly expanding choice as well as capacity can governments expect to effectively sustain an optimal mix of care provision in the community.     

Wages or welfare? Compensating caregiving in two conservative social welfare states

While nearly all developed nations have some form of attendance allowance for the elderly and disabled, the United Kingdom and several of the American states have provisions to pay caregivers directly if they are family members. This paper compares and contrasts provisions in the U.K. Invalid Care Allowance with provisions of a program in one American state-Michigan. Such payments potentially benefit disabled people, caregivers, and cost-conscious states. However, two particular goals shape the programs' impacts on caregiver functioning and adequacy. One is the extent to which programs operate as welfare provisions and benefits directed at the social or household economy. The other is the extent to which they function as a substitute for wage labor in the market economy. Each of these can be assessed in relation to the real, personal choices and economic gains it provides caregivers. Presumably, both are important in sustaining adequate and satisfying long-term care. Only by truly expanding choice as well as capacity can governments expect to effectively sustain an optimal mix of care provision in the community.     

Developing a community-based care system for seriously emotionally disabled children and youth

The needs of emotionally disabled children and their families are not optimally served within traditional mental health service delivery systems. Policies are inadequate, delivery systems are insufficient and underfunded, and supporting research is sparse. As communities begin addressing the needs of the seriously emotionally disabled child and family, planning should address community coordinated services. Such systems, however, are not easily established and maintained in communities accustomed to addressing children's needs in terms of existing fragmented categorical structures. National models exist but care and time are required to adapt critical elements from these models to local need. This article will review the rationale for integrated community-based, case management services for children and adolescents. A case example is offered illustrating issues affecting the development of one community support system.