Family and friends as respite providers

Consumer-directed service options in home- and community- based care are increasingly available to adults with chronic conditions and cognitive impairments and to their family caregivers. Few studies, however, examine the experience of family caregivers who, when given a choice of providers of respite assistance (i.e., relief from the stress of providing constant care), prefer to hire family or friends rather than service providers. This study describes the in-home respite experience of family caregivers served by California's Caregiver Resource Centers "direct-pay" program who hire family or friends (n = 39) or service providers (n = 77) to provide in-home respite assistance. Findings revealed similarities between the two groups with few exceptions: caregivers who hired family or friends reported poorer physical health, were slightly more satisfied with the respite assistance, and received more hours of respite at a lower unit cost. These findings lend support to consumer-directed respite service options where family caregivers are given flexible alternatives that may act to remove barriers to respite service availability and use.     

Family and Friends as Respite Providers

Abstract

Consumer-directed service options in home- and community-based care are increasingly available to adults with chronic conditions and cognitive impairments and to their family caregivers. Few studies, however, examine the experience of family caregivers who, when given a choice of providers of respite assistance (i.e., relief from the stress of providing constant care), prefer to hire family or friends rather than service providers. This study describes the in-home respite experience of family caregivers served by California's Caregiver Resource Centers “direct-pay” program who hire family or friends (n = 39) or service providers (n = 77) to provide in-home respite assistance. Findings revealed similarities between the two groups with few exceptions: caregivers who hired family or friends reported poorer physical health, were slightly more satisfied with the respite assistance, and received more hours of respite at a lower unit cost. These findings lend support to consumer-directed respite service options where family caregivers are given flexible alternatives that may act to remove barriers to respite service availability and use.     

A qualitative look at child care selection among rural welfare-to-work participants

The welfare reforms of 1996 changed the administration of public assistance to children and families. One of the key provisions, requiring parents to join the workforce, resulted in an expanded need for child care. Prior research demonstrates that welfare recipients, particularly in rural areas, utilize informal child care arrangements. Further, recipients in rural communities face greater challenges due to a lack of transportation, geographic spread, and less access to services. This qualitative study examined the child care selection experiences of 33 welfare recipients in six rural Northern California counties. More families selected home-based than center-based child care. During their search processes, welfare recipients utilized both formal and informal routes to locate child care providers. Parents took advantage of their connections with the social service system, but also accessed their social networks for recommendations. Rural families also reported that their choices were constrained by the available programs, transportation, and by the quality of the programs they were able to access. Given the high rate of utilization of home-based arrangements among families in welfare-to-work programs, quality of care in such programs should be improved. Recommendations for increasing quality and access, as well as supports for welfare to work participants, are discussed.     

Engaging with Disability Services: Experiences of Families from Chinese Backgrounds in Sydney

People from Chinese backgrounds remain underrepresented in disability service use. This paper explores family experiences of using child disability support services to understand how migration and their cultural expectations about disability and service affect the way they use services. Qualitative semistructured interviews were conducted with 13 family carers in Sydney. They were striving to gain good support for their child from formal services. However, most of them were reluctant to express any dissatisfaction to service providers, which meant that assertively requesting different support was difficult and culturally inappropriate. In response, service providers can design nonconfrontational ways to elicit this vital information and support families to gain experience tackling conflict.     

State expenditures on home and community based services and use of formal and informal personal assistance: a multilevel analysis

Despite wide state variation in commitment to home and community-based services (HCBS) for functionally impaired older persons, little is known about how such variation affects older adults' strategies to compensate for their functional limitations. This study examines the association of state HCBS expenditures with use of formal and informal personal assistance among non-institutionalized older Americans aged 70 and older with functional limitations. We conducted multilevel multinomial logistic regression analysis using data from the first wave of the Assets and Health Dynamics among the Oldest Old Survey, combined with data on state HCBS expenditures. Controlling for individuals' demographic, socioeconomic, and care needs factors, persons residing in states with higher HCBS expenditures were more likely to use formal personal assistance, but not less likely to use informal assistance. Our study suggests state variation in HCBS expenditures leads to inequitable access to formal personal assistance, especially among those with high functional limitations.     

Paid personal assistance services:an exploratory study of working-age consumers' perspectives

This study examined the experiences of individuals who use paid personal assistance services (PAS). Structured interview data were collected from a convenience sample of 24 working-age individuals from diverse backgrounds recruited from Centers for Independent Living in nine states. Respondents described their general satisfaction with current paid PAS, but many reported previous experiences with poor care related to the low wages, lack of training of PAS providers, and an inadequate supply of providers. Respondents reported many unmet needs because of a shortage of hours provided by state programs and the lack of help with daily living activities, transportation, childcare, and social activities. The respondents strongly preferred consumer-directed care.     

The limits of multiculturalism in elder care services

Over the past decade, policymakers and practitioners in the field of aging have been increasingly challenged to develop appropriate health and social services for elders from diverse ethnic communities. This has largely resulted from concerns regarding the significant barriers to care faced by disenfranchised elders. However, advances in the articulation of multicultural practice and policy dealing with ethnic communities have focused almost exclusively on developing competency skills based on individual communication and understanding between formal service providers and clients rather than on exposing and altering institutional structures and power relations marked by racism. Indeed, antiracist agendas are rarely articulated in gerontological settings. This article reports on some of the central findings of a qualitative institutional ethnographic study on health care access among ethnic elderly women. It addresses the question of how multicultural programs and policies operate in elder care services and how they are experienced by ethnic elderly female clients and their service providers.     

Variations in provider capacity to offer accessible health care for people with disabilities

Since social workers are likely to practice in a range of health care settings, their training focusing on human behavior in the social environment could help providers develop strategies to improve access to care for people with disabilities. In this article, results from a comprehensive survey of providers about access to health care for people with a broad range of disabilities are reported. Results suggest that a minority of providers report difficulty serving people with disabilities. However, dentists and mental health/substance abuse providers are significantly less likely than other providers to report that they provide accessible services to individuals with disabilities. These providers are less likely to report having had training related to mobility impairments, providing mirrors at their facility, having an accessible door, or providing assistance with personal care needs, and are more likely to report that their building poses a barrier for people with disabilities. Social workers are well positioned to take a leadership role in working with providers and patients to improve access to health care for people with disabilities. A social work framework of understanding the individual in a social environment may be the most appropriate perspective for creating innovative strategies for addressing the complex, multidimensional needs of people with disabilities who experience limited access to care.     

Community responsibility for the self-neglectful client

Self-neglectful clients, including the elderly, are in jeopardy, partly through their refusal to accept community services that could help them; they require protection from the community. These people are alienated and isolated, and need to be integrated into the community. Their individual rights to control their own lives, however, must be protected. It is the responsibility of the community to structure services in a way that will engage these people. A comprehensive community service program appropriate to their needs would integrate formal and informal care systems by interweaving professional services, informal assistance, and mutual aid within structures that facilitate coordination of formal care programs.     

Variations in Provider Capacity to Offer Accessible Health Care for People with Disabilities

Abstract

Since social workers are likely to practice in a range of health care settings, their training focusing on human behavior in the social environment could help providers develop strategies to improve access to care for people with disabilities. In this article, results from a comprehensive survey of providers about access to health care for people with a broad range of disabilities are reported. Results suggest that a minority of providers report difficulty serving people with disabilities. However, dentists and mental health/substance abuse providers are significantly less likely than other providers to report that they provide accessible services to individuals with disabilities. These providers are less likely to report having had training related to mobility impairments, providing mirrors at their facility, having an accessible door, or providing assistance with personal care needs, and are more likely to report that their building poses a barrier for people with disabilities. Social workers are well positioned to take a leadership role in working with providers and patients to improve access to health care for people with disabilities. A social work framework of understanding the individual in a social environment may be the most appropriate perspective for creating innovative strategies for addressing the complex, multidimensional needs of people with disabilities who experience limited access to care.     

Community Responsibility for the Self-Neglectful Client

Self-neglectful clients, including the elderly, are in jeopardy, partly through their refusal to accept community services that could help them; they require protection from the community. These people are alienated and isolated, and need to be integrated into the community. Their individual rights to control their own lives, however, must be protected. It is the responsibility of the community to structure services in a way that will engage these people. A comprehensive community service program appropriate to their needs would integrate formal and in normal care systems by interweaving professional services, informal assistance, and mutual aid within structures that facilitate coordination of formal care programs.     

Setting priorities in aging populations: formal service use among Mexican American female elders

This study establishes empirical patterns of formal service use by a sample of 483 elderly Mexican American women, and identifies the predictors of formal service utilization. Results indicated two patterns of service use-in the home and at senior centers. Regression analysis demonstrated that the best predictors of who used formal in-home services were those with functional impairment in Instrumental Activities of Daily Living (IADLs) and those with the least amount of assistance with IADLs provided by family members. Living alone and attending group social events were the best predictors of the use of senior center services. Anticipated changes in the Mexican American population portend a growing need for both in-home and senior center services. These findings can be used to establish policy and programming priorities for this neglected population. If resources are to be effectively targeted to frail elders, in-home services should receive priority, and the provision of in-home services should be modified to include additional programs that facilitate care of the elderly by the family.     

Medicaid State Plan personal care services: trends in programs and policies

Policymakers face mounting pressures from consumer demand and the 1999 Olmstead Supreme Court decision to extend formal (paid) programs that deliver personal care to the elderly, chronically ill, and disabled. Despite this, very little is known about the largest program that delivers personal care: the Medicaid State Plan personal care services (PCS) optional benefit. This paper presents the latest available national program (participant and expenditure) trend data (1999-2002) on the Medicaid PCS benefit and findings from a national survey of eligibility and cost control policies in use on the program. The program trends show that, over the study period, the number of states providing the Medicaid PCS benefit grew by four (from 26 to 30), and national program participation, adjusted for population growth, increased by 27%. However, inflation-adjusted program expenditures per participant declined by 3% between 1999 and 2002. Findings from the policy survey reveal that between 1999 and 2002 there was a marked decline in the range of services provided, and by 2004, almost half the programs operated a cap on the hours of services provided.     

Personal Assistance for People with Intellectual Impairments: experiences and dilemmas

The article gives an account of how personal assistance is adapted to people with intellectual impairments in Norway and the experiences with the arrangement for this target group. Most space, however, is given to a discussion of the challenges and dilemmas of including people with intellectual impairments in the target group for personal assistance, since other people than the user as a rule fill the role as manager of the service. Special attention is paid to the parents' role since they often act as managers on behalf of their sons/daughters. Furthermore, the assistants' role is discussed and the importance of how they meet the users. Finally, there is a discussion of the consequences the extension of personal assistance to intellectually impaired users might have both for personal assistance as a service and for the ordinary care services.     

Medicaid State Plan Personal Care Services

Abstract

Policymakers face mounting pressures from consumer demand and the 1999 Olmstead Supreme Court decision to extend formal (paid) programs that deliver personal care to the elderly, chronically ill, and disabled. Despite this, very little is known about the largest program that delivers personal care: the Medicaid State Plan personal care services (PCS) optional benefit. This paper presents the latest available national program (participant and expenditure) trend data (1999–2002) on the Medicaid PCS benefit and findings from a national survey of eligibility and cost control policies in use on the program. The program trends show that, over the study period, the number of states providing the Medicaid PCS benefit grew by four (from 26 to 30), and national program participation, adjusted for population growth, increased by 27%. However, inflation-adjusted program expenditures per participant declined by 3% between 1999 and 2002. Findings from the policy survey reveal that between 1999 and 2002 there was a marked decline in the range of services provided, and by 2004, almost half the programs operated a cap on the hours of services provided.     

“Giving Voice” to Youths in Out-of-Home Placements

This article describes the impact of participating in a unique approach to positive youth development on a group of youths in out-of-home placements. The program provided young people with the opportunity to inform service providers and other adults about their experiences within the youth services system. Analyses of qualitative data identified seven arenas in which participating youths appeared to be influenced—initiation and growth, safety, connection, expression, personal impact, conflict and misbehavior, and opportunity to make a difference. Findings indicate that participants gained resiliency in the face of the adversities they had and continue to experience. Their life skills and competencies were enhanced. They developed a more positive outlook on life and a greater sense of self-efficacy and self-determination. Participation lessened their feelings of isolation, powerlessness, and apathy.     

Trust and recognition: a comparative study of client attitudes and workers' experiences in the welfare services

Since professional conduct is important in the lives of many people, trust and recognition between professionals and their clients are critical. Social professionals administer public resources on behalf of the welfare state, and their approaches and methods of intervention are mostly founded in current welfare policy. Despite this mandate, social professionals receive little acknowledgement and recognition. This article investigates the level of public trust in the Norwegian social services compared to the national insurance agencies, and to what extent the providers of these welfare services experience recognition and public approval. A central question is whether these aspects of external appreciation influence the professionals' motivation and feelings of accomplishment. Findings indicate that the social services receive less public support than the social insurance agencies, owing to the discretionary services provided and the stigma related to social assistance. The variation in institutional trust is reflected by the differences in workers' subjective experiences. That result notwithstanding, the service providers reveal a split view of themselves: while they experience themselves positively with respect to involvement and pride in their work, they also see themselves through the deprecating eyes of the public.     

Meeting the Service Needs of Young Fathers

Until the early 1980s, the needs of young fathers went largely unnoticed by policy makers and social service providers. Many programs for adolescent fathers originally started in order to benefit teenage mothers and their children (Leitch et al., 1993). It was later recognized that young fathers also need assistance to successfully become productive and responsible adults (Robinson, 1988; Leitch et al., 1993; Kiselica, 1995). Program designs have been based on a set of implicit assumptions: 1) if programs are offered, young fathers will enroll; 2) the services will meet the needs of participants; 3) once young men enroll in a program, they will use the services that are available; and 4) the services will be beneficial for recipients and will produce positive outcomes (Kiselica, 1995; Children and Youth Funding Report, 1998; Smith, 1997; DeParle, 1998). However, only limited research has been conducted to explore whether these assumptions are appropriate or to document programmatic successes and difficulties (Achatz and MacAllum, 1994; Marsh and Wirick, 1991; Sander, 1993). This paper adds to the literature by reviewing each of the assumptions within the context of one program's experience. It considers issues associated with outreach and enrollment, service delivery, and achieving desired outcomes for program participants.     

Meeting Life Challenges

SUMMARY

Mental health and social service providers need to understand the contextual experience of diverse aging populations and the types of life challenges they have encountered. This research examined the life challenges specified by a purposive sample of 75 urban community-dwelling low-income older adults from four high-rise housing facilities. Thirty-four study participants were Jewish American and 41 were African American. Results indicate that many participants of both groups identified personal events such as bereavement and health as stressors, but only the Jewish Americans identified societal events such as World War II. Both groups found social resources moderately valuable in meeting life challenges, but religious resources were frequently identified by African American older adults and personal resources were highly endorsed by Jewish Americans, resulting in a hierarchy of coping styles for each group. Results suggest that mental health and social service providers can create interventions to reinforce and strengthen natural client resources that may vary according to ethnic and racial differences     

Barriers and facilitators for access to mental health services by traumatized youth

Polytrauma is a highly prevalent public health problem in the U.S. with even higher rates in urban areas. Children with polytrauma often end up in multiple child-serving systems (e.g., mental health, child welfare, education, juvenile justice) with needs that are both complex and severe. Providers within these child-serving systems have potential to serve as gatekeepers to trauma services by linking youth with trauma-informed treatments and supports that promote recovery. The purpose of our study was to assess the perspective of providers who participated in a nine-month, trauma-informed care (TIC) training intervention on 1) their capacity to make referrals to trauma-specific services following the training, and 2) factors external to the training intervention that supported or hindered their ability to link traumatized youth with services. A subset of sixteen participants from the TIC training completed individual interviews. These participants were predominantly female, African American, and based in the social services sector. The constant comparative method was used to derive three thematic domains related to participant perceptions regarding youth referrals: 1) Organizational and provider capacity to provide trauma treatment or to make referrals to trauma-specific services, 2) Barriers to youth accessing trauma services, and 3) Suggestions for improving coordination of care and referrals. Our study highlights the influence of contextual factors on whether a TIC training can improve the capacity of agencies and individual providers to support traumatized youth in accessing appropriate services. The development of a structure that formally connects youth-serving agencies and providers with specialists trained in addressing traumatized youth is recommended.