'How long are we able to go on?' Issues faced by older family caregivers of adults with disabilities

Research-informed policy and practice is needed for older caregivers of adult sons/daughters with disabilities. These caregivers are often under tremendous stress because of failing health, financial pressures, bereavement and worry about the future of their sons/daughters. Twenty-nine older parents/caregivers of 27 adults with intellectual and/or developmental disabilities were interviewed to explore their views and experiences regarding long-term care and service arrangements, health and psychological needs and 'future planning'. Findings show a severe lack of support, respite care and future planning which causes high stress levels for caregivers. Policy makers and researchers working in this field need to take into consideration the needs of older caregivers when making future plans for adults with disabilities.

Echoes of the future: Adults with disabilities living at home with their parents

Almost 90% of all adult sons and daughters with disabilities live at home with their parents. Consequently, they have life experiences that are atypical for most of their adult peers and their aging caregivers are under stress due to failing health, financial pressures, bereavement, and worry about the future.

Adults with intellectual disabilities and aging parents took part in focus groups and interviews. results show a loving and caring home environment but evidence a lack of effective life skills development and futures planning. the paper draws attention to the inevitable crisis that occurs when aging caregivers are no longer able to care. The urgent need for skill development and timely futures planning is outlined.

Psychological impact of DAFNE training in adults with Type 1 diabetes

This thesis investigated the psychological impact of an education intervention, Dose Adjustment for Normal Eating (DAFNE), in adults with type 1 diabetes. The results demonstrated that the education programme improved participants' subjective wellbeing, self-efficacy and reduced diabetes-related distress compared to a comparison group that engaged in usual care. The portfolio examined the use of mindfulness-based strategies, in particular Acceptance and Commitment Therapy (ACT) in four case studies which illustrated that the impact of the therapy is directly related to the the willingness of the client to engage in the practices.

Black adults with disabilities : a statistical report drawn from Census Bureau data.

Mode of access: Internet.

Abuse and neglect of adults with disabilities : DHS Office of the Inspector General FY ... annual report.

Description based on: 2004/2005 ; title from cover.

Adults With Disabilities Domestic Abuse Program : [annual report].

Description based on: FY 2001 ; title from cover.

Domestic abuse of adults with disabilities : report to the Illinois General Assembly.

Required by the Domestic Abuse of Disabled Adults Intervention Act ("act"), P.A. 87-658.

Domestic abuse and neglect of adults with disabilities : study and demonstration act PA 84-881 : a report to the General Assembly and the Governor.

"April 1, 1986."

Personalised social care for adults with disabilities: A problematic concept for frontline practice

This paper explores the complexities and contradictions of frontline practice that pose problems for personalised social care through enhanced choice. It draws on semi-structured interviews with community care workers, social workers, occupational therapists and care managers in a social service department. Practitioners interviewed were asked about their current assessment and documentation system, including the assessment documents currently used; how they approached information gathering and the topics they explored with service users; and their experience of documenting assessment and care management. The paper argues that the validity and sustainability of personalised social care in frontline practice relies on developing a thorough understanding of the complex and implicit assessment processes operating at the service user/practitioner interface and the inevitable tensions that arise for practitioners associated with the organisational context and broader service environment. The findings demonstrate the variability among practitioners in how they collect information and more importantly, the critical role practitioners occupy in determining the kinds of topics to be explored during the assessment process. In so doing, it shows how practitioners can exert control over the decision-making process. More importantly, it provides some insight into how such processes are shaped by the constraints of the organisational context and broader service environment. Complexities and contradictions may be an inherent part of frontline practice. The issues discussed in this paper, however, highlight potential areas that might be targeted in conjunction with implementing personalised social care through enhanced choice for people with disabilities.

A qualitative study of the impact of an educational intervention on older parents of adults with disabilities engaged in the phenomenon of future-care planning

This phenomenological study describes the impact of an educational intervention on the day-to-day experiences of older parent caregivers of adults with developmental disabilities who were engaged in the process of future-care planning. Qualitative strategies of individual and focus group interviewing were used with a purposive sample of older caregivers. Participants were members of an existing parent support group. Twenty-three caregivers representing 18 families were queried before and after the education program. The disabilities represented were mental retardation, cerebral palsy and autism. Parents whose children live at or away from home were included. The intervention was conducted on five Saturdays over a two month period; the duration of the study was five months. Findings used typical words of the respondents from their individual and focus group interviews to describe feelings, attitudes and experiences in making future-care plans. Data from verbatim transcriptions and researcher's field notes were coded, analyzed, sorted into themes, and subjected to interpretive analysis. Respondents showed a positive change in attitudes and actions after participating in the education program, regardless of their initial stage in care planning. Fears were replaced by hope and determination; hesitation and ineptitude by feelings of competence and confidence; and procrastination and delay by purposeful actions. Other key findings: use of a planning document greatly aided caregivers; barriers to planning were often intrinsic and amenable to education; residential plans were the most difficult aspect of planning; listening to the experiences of other parent caregivers was helpful; and making burial plans for their offspring was one aspect of planning parents wished to do themselves. ^

THE HEALTH OF YOUNG ADULTS WITH DISABILITIES IN THE UNITED STATES: THE COLLECTIVE ROLES OF RISK FACTORS IN SOCIAL ECOLOGIC FRAMEWORK

Background: Over the last few decades, the prevalence of young adults with disabilities (YAD) has steadily risen as a result of advances in medicine, clinical treatment, and biomedical technologythat enhanced their survival into adulthood. Despite investments in services, family supports, and insurance, they experience poor health status and barriers to successful transition into adulthood. Objectives: We investigated the collective roles of multi-faceted factors at intrapersonal, interpersonal and community levels within the social ecological framework on health related outcome including self-rated health (SRH) of YAD. The three specific aims are: 1) to examine sociodemographic differences and health insurance coverage in adolescence; 2) to investigate the role of social skills in relationships with family and peers developed in adolescence; and 3) to collectively explore the association of sociodemographic characteristics, social skills, and community participation in adolescence on SRH. Methods: Using longitudinal data (N=5,020) from the National Longitudinal Transition Study (NLTS2), we conducted multivariate logistic regression analyses to understand the association between insurance status as well as social skills in adolescence and YAD’s health related outcomes. Structural equation modeling (SEM) assessed the confluence of multi-faceted factors from the social ecological model that link to health in early adulthood. Results: Compared with YAD who had private insurance, YAD who had public health insurance in adolescence are at higher odds of experiencing poorer health related outcomes in self-rated health [adjusted odds ratio (aOR=2.89, 95% confidence interval (CI): 1.16, 7.23), problems with health (aOR=2.60, 95%CI: 1.26, 5.35), and missing social activities due to health problems (aOR=2.86, 95%CI: 1.39, 5.85). At the interpersonal level, overall social skills developed through relationship with family and peers in adolescence do not appear to have association with health related outcomes in early adulthood. Finally, at the community level, community participation in adolescence does not have an association with SRH in early adulthood. Conclusions: Having public health insurance coverage does not equate to good health. YAD need additional supports to achieve positive health outcomes. The findings in social skills and community participation suggest other potential factors may be at play for health related outcomes for YAD and the need for further investigation.

Implications of the Information Technology Revolution for People with Disabilities

The paper focuses on opportunities for the integration of persons with different types of disabilities in the information technology (IT) labour market. Recent IT developments are identified and examined for their potentially harmful or beneficial effects on access to the IT labour market for persons with disabilities. The opportunities created by new job creation, new forms of training, teleworking, and the role of assistive technologies in facilitating workplace accommodations are briefly described. The focus is on new options for the design and implementation of computer-related assistive technologies in the workplace, and the impact of teleworking and the World Wide Web on employability and work-related training of persons with disabilities. The paper closes with a brief discussion of the roles that government agencies, business firms, labour unions, non-governmental organisations and education can play to help people with disabilities join the IT revolution and share its benefits.

The transition from pediatric to adult health care services for young adults with a disability : an ethical perspective

Young children with disabilities and their carers or parents tend to form a long-term dependent relationship with a paediatrician throughout childhood At some stage when the young person with a disability reaches early adulthood, the relationship is severed This paper draws upon recent research undertaken by the authors that describes the difficulties experienced by young people with disabilities as they go through the transition from paediatric care to adult mainstream health care services. The purpose of this article is to present the argument that the dependent, paternalistic relationship that tends to exist between young people with disabilities (and/or their carers) and paediatricians throughout childhood does not facilitate the successful negotiation of adult mainstream health care services, nor optimally promote the well-being of these young people with disabilities. It is proposed that the promotion of autonomy (or self-determination) via a well planned transition program will increase the likelihood that young adults with disabilities and/or their carers will be empowered to successfully negotiate the current mainstream health care system in Australia, and will enhance the well-being of young adults with disabilities.