The issue of long-term care and support of people with acquired brain injury has been a significant clinical and policy issue for some time; however. as evidence accrues about increases in incidence and survival from brain injury, the focus on this issue sharpens (Kolpan, 1990; McCluskey, 2005). The net effect of these increases (in the number of new brain injuries per year plus survival beyond the acute phase) is a sharp increase in prevalence, or the number of people living with the effects of brain injury in a given population. Add to that new information that has recently been published regarding long-term survival, and it becomes immediately apparent that factors are converging to produce an immanent increase in the economic and human costs of acquired brain injuries, at least in the developed world.

There has been a dramatic increase in recent years in the literature available on community integration among people with acquired brain injuries. At the same time, however, clinicians are calling for information that has utility in the complex environment of community practice. The study was a scoping review to address the question: What is known from the existing literature regarding the best ways to promote community integration in the postacute phase of brain injury recovery? From a preliminary pool of 925 studies identified by electronic searching of 5 databases in a 15-year time window, a final set of 30 was selected for further review, referring to 25 distinct programs. This scoping review has shown that there are 5 types of programs typically offered to survivors of brain injuries to assist with community integration: supported employment, traditional rehabilitation, environmental adaptation, support development and transitional living. These 5 approaches were primarily used to address 2 aspects of community integration: traditional rehabilitation was most commonly used to promote independent living, and supported employment was the most common approach used to promote productive occupation. Themes that emerged from the review were the need for highly individualised programming, in vivo approaches, tailored supports, early intervention and a focus on participation. Methodologically, the study represents an important acknowledgment of the valuable information that is available in the literature in descriptive and small sample research.

Objectives: To investigate care needs, functional outcome, role participation and community integration approximately nine years following severe brain injury. To gain an understanding of the ongoing cost of care and support needs for this group. Participants: 13 individuals who had sustained an extremely severe traumatic brain injury (TBI), between 8 and 9 years previously participated in the study. These individuals were the remaining participants of a larger sample of consecutive admissions between 1996 and 1998 at Ivanhoe Manor Rehabilitation Hospital. Measures: Structured Interview, Functional Independence Measure, Community Integration Questionnaire, Care and Needs Scale and Role Checklist. Results: The majority of the participants were reported to have high support needs, with 6 participants (46%) requiring 24-hour support. Four participants were reported to able to be left alone for between a few hours per day to almost all week. Three participants reported that they were completely independent. The participant's characteristics are described in terms of functional independence, community integration and role participation. Overall care needs appear to have remained relatively stable between 2 and 9 years postinjury. However, there was a shift in the proportion of paid and gratuitous care over time, with a decrease in paid care and increased gratuitous care noted from the 2-year to long-term follow-up time points. Conclusions: Severe TBI has a long term influence on life roles, care needs and functional independence. The current study suggests that high care needs do not necessarily preclude participants from leading active lives and participating in valued life roles. The importance of social support in facilitating participation in activity and the potential issues for caregiver burden, given the increase in gratuitous care over time, should be acknowledged and further research in this area is recommended.

The purpose of the present article is to describe the issues associated with providing lifelong accommodation and support to people with severe brain injury, neurobehavioural disability, and overt challenging behaviours. In particular, the article focuses on two groups of people within an Australian context: (a) those who live in community settings but whose behaviour is not adequately managed even by specialist outreach behaviour management services, and (b) those who are confined to aged care residential facilities and who show challenging behaviour. These groups bring to the fore different lifelong behaviour management issues. At present, if community-based clients seriously offend or have an adequate psychiatric diagnosis, they may be placed in heavily secured psychiatric units or prison. Otherwise, by default, they will reside in less restrictive options such as family homes and shared supported accommodation. We will argue that the current service system lacks the ability to apply appropriate structure and control to many clients with serious challenging behaviours, and propose that specialised facilities would make an important addition to the service system. Conversely, young clients confined to residential aged care facilities live in impoverished environments that often contribute to challenging behaviour that can be enormously disruptive, distressing, and unsafe. We will review the recent Australian State and Federal Government initiative aimed at transitioning some young people out of nursing homes, and we raise considerations for future service development. There are many individuals with the potential to make significant gains in a tightly structured setting before returning to the community, while others will manage well with long-term placement in a setting designed for residents with neurobehavioural disability. Case studies and service data are used to support these arguments, and key elements of accommodation and rehabilitation models for those in need of long-term neurobehavioural support are described.

Outcome studies have established that successful community living is compromised in the population of individuals with traumatic brain injury and chronic behavioural difficulties along with a co-occurring diagnosis of substance abuse and/or mental health disorder. Two studies are presented. The first was aimed at describing long-term outcome of a sample of individuals (N = 51) served by the New York State Department of Health TBI Medicaid Waiver Program. Each of the participants was diagnosed with TBI plus either substance abuse or a mental health disorder, or both. Because of significant behavioural challenges, all of the participants were in a restrictive living setting the year before enrolment in the waiver program (e.g., nursing or correctional facility). Data on community living arrangement, self-reported community integration experiences, and costs are presented. Results indicate that most of the participants (41 of the 46 who were alive and living in state) continued to live in the community 8 to 9 years after commencement of community support services. The participants' community integration responses were generally positive and cost data demonstrate substantial savings to the state for this cohort. Comparing prewaiver costs in residential settings with most recent (2005) costs for community supports, there was an average daily cost savings of US$137 per person for the 1996 cohort and US$144 per person for the 1997 cohort. The second study explored the use of project-oriented interventions and supports in an agency that provides community support services to this dual diagnosis population. Project-oriented services are described as meeting many needs common to this dual-diagnosis population. Clinical staff (N = 11) and a sample of waiver participants (N = 7) were surveyed. Results suggest that the use of personally meaningful projects can become a clinical habit for staff and that projects are generally judged by participants to be a meaningful use of time, and significant in giving them an opportunity to play an expert role and to help others.

Establishing a viable program of care and support for people with severe brain injury is challenging for professionals and family members. The aims of this grounded theory study were to explore how decisions about care were made following brain injury when an individual had received third party compensation, and factors or conditions that influenced care. The sample (n = 51) included 14 people with traumatic brain injury (mean age 36.5 years, range 19–56; mean time post-injury 9.9 years, range 2.5–37), and 37 ‘others’, who either provided or coordinated care (12 family members, 14 paid carers, 6 case managers, 4 directors of care agencies and 1 estate manager). Data were collected using single interviews with each participant. All 14 people with brain injury had received 24-hour support at the time of hospital discharge; at follow-up, only 8 received 24-hour support. Care decision-making and care maintenance occurred as an iterative process. Participants made decisions about the best living situation, configuration of carers and level of care, and then strived to maintain stable care. Care decision-making involved three key strategies (gathering information, appraising alternatives, and enacting a decision). Care maintenance also involved three key strategies (monitoring, managing conflict and supporting carers). Mutual risk tolerance and the presence of a case manager were necessary conditions for good care management, and enabled a person with brain injury to spend time alone, take low-level risks and experience autonomy. Professionals and family carers can use the findings of this study to actively increase risk taking and autonomy.

People surviving severe acquired brain injury (ABI) may potentially benefit from the Council of Australian Governments' (COAG) 5-year initiative for young people with disability in residential aged-care facilities. Yet critical examination of this policy initiative for ABI population is warranted for 2 reasons. First, reliance on the disability sector to resolve the complexities of long-term care for people with ABI detracts attention from systemic failures at the health/disability sector interface, and notably, debate concerning the role of, and right to rehabilitation. Second, the COAG initiative is being pursued within an extraordinarily complex and variable contemporary care environment, involving multiple services and sectors, and historically, high unmet need. This raises questions as to the adequacy and sustainability of care provided under the responsibility of state-based disability services. In this article, it is argued that long-term care for young people with severe ABI is better served by incorporating a health and rehabilitation perspective alongside a disability support approach. Although the effectiveness of rehabilitation may be contested in some instances of very severe ABI, nevertheless the role of rehabilitation in seeking to reduce the number of young people at risk of entering residential aged care needs to be addressed in policy solutions. It is also suggested that provision of long time care in the contemporary care environment involves a number of challenges due to the complex and changing patterns of need, diverse funding arrangements and mix of government and nongovernment services, and the increasing demand for care.