This study explored the perspectives and experiences of ABI service providers, consumer advocates and government representatives regarding the availability and accessibility of appropriate living environments for persons with ABI in a Canadian setting. Interviews revealed that challenges associated with finding appropriate living environments result from structural and systemic weaknesses, including insufficient resources and coordination of services, inappropriate waiting environments, a two-tiered funding system and an absence of services that meet the individualized needs of the ABI population. Solutions to these issues were also proposed.
The challenges reported by the ABI service providers are similar to those reported by survivors of ABI and their families. In a US study (Leith et al. 2004
), persons with traumatic brain injury and their families reported a need for an early, continuous and comprehensive service delivery system. They felt that a state-wide agency devoted to the coordination and execution of a comprehensive service delivery system would address the challenges in accessing appropriate ABI care. They identified a need for survivors of ABI to connect with the system early, to enable families to make informed decisions, to encourage survivors of ABI to live as independently as possible, to assist family caregivers by offering more respite and in-home health services, and to maintain follow-up contacts. They also reported a need for information and education for service providers, clients and their families, including more specialized training for ABI support staff and health professionals.
Providers in this study indicated that survivors of ABI generally have quicker access to more appropriate services if the cause of their injury makes them eligible for private funding such as insurance payments or legal settlements. However, they also noted that private funding can create other barriers to appropriate care. Previous research found that Canadian and US survivors of ABI and their families experience frustration in trying to access private funding, reporting that compensation and services were often difficult to obtain and that they had to justify their needs repeatedly to the compensation agent (Lefebvre et al. 2005
; Leith et al. 2004
Providers offered a number of solutions that may begin to address problems within the existing ABI system. They felt that a wider range of options would provide more choice and availability, allowing service providers to develop programs of care to meet the individual needs of ABI survivors.
Many of the reported challenges result from a lack of sufficient funding allocated for the ABI population. Providers in this study stated that government funding is allocated on the assumption that patients with ABI get better, move through the system and recover; however, this is not the reality for all ABI survivors. US survivors of ABI felt that law- and policy makers do not know enough about their short- and long-term needs (Leith et al. 2004
). Policy makers must be better informed about the needs of survivors of ABI so that more funding, and more long-term funding, can be devoted to this population, and ABI-specific living environments and services can be made available. Increased funding could also help provide more professional services and specialized settings with trained staff. In the long run, this approach may be less costly to society, because a stable living environment with early interventions may reduce hospitalization or the use of health services.
Despite the weaknesses in the ABI system, some progress has been made in the last few years. Some publicly funded ABI-specific housing already exists. The MOHLTC recently provided $5.6 million to provide better care for patients with severe behavioural problems and has expressed interest in building more specialized ABI units. The presence of the Toronto ABI Network has enabled providers to offer more adequate and efficient services, and many providers felt the Toronto ABI Network should be a model for developing a province-wide network to improve ABI service provision in Ontario. A centralized system, whereby information about all ABI service providers in Ontario (e.g., services offered, availability and information about ABI clients) is updated and shared, would address the problems associated with the current lack of coordination within the ABI system.
A potential limitation of this study is that interview participants were not specifically asked who should be responsible for implementing the recommendations that they were proposing. It is evident, however, that most of these solutions, particularly the provision of post-acute care, fall within the mandate of the MOHLTC both centrally and more locally, as more funding is being transferred to local health integration networks (LHINs). While efforts to improve the system should start with the MOHLTC, many of the solutions listed in (Table ) require collaboration between the MOHLTC and a wide range of ministries, agencies, associations and brain injury networks at the municipal, provincial and federal levels.
The Ministry of Training, Colleges and Universities, for example, could have an additional role to play in addressing the lack of interest in or sufficient availability of health-related training programs that have a focus on brain injury. Specialized community agencies and advocacy groups also have a role in promoting and providing ABI-related training to those already working with ABI survivors. The Ministry of Transportation and relevant municipal governments are key players in addressing the lack of appropriate transportation (both within and between urban centres/regions) for clients to access care and support. The Ministry of Municipal Affairs and Housing, as well as other arms of government that offer financial assistance to people renovating their homes to accommodate disability (i.e., Canadian Mortgage and Housing), should be involved to address the need for affordable supportive housing. Should there be an increase in lockdown/secure units, the Ministry of Community Safety and Correctional Services would have a role in promoting awareness/training for staff regarding clients who may benefit from referral to such resources. Finally, efforts to monitor, track and document patient needs and care programs, as well as initiatives to exchange information, would require the participation of provincial ministries as well as established brain injury networks. Overall, it is evident that intra-governmental coordination and collaboration are necessary to address post-acute care needs of ABI consumers.
Because respondents represented existing organizations and institutions, many of the solutions offered were within the range of existing options. Innovative approaches – such as the use of technology for individual support (especially in more underserved areas), home modifications to complement or reduce staffing requirements, and more accessible education programs for staff in residential or institutionalized settings – did not emerge. Consideration should be given to innovative technology and its ability to enhance the quality of life of long-term consumers.
The results of this qualitative study represent the perspectives of stakeholders from different parts of Ontario who deal directly with ABI survivors daily and are intimately aware of the challenges faced by people who are seeking ABI-appropriate living environments. Because the participants represented a wide variety of organizations, job positions and provincial regions, we believe that the results offer a fairly accurate and broad portrayal of what is happening in the existing ABI system province-wide. The study's findings should, however, not be generalized or assumed to be representative of the perspectives and experiences of all ABI service providers in Ontario. This study provides an overview of challenges to appropriate living environments for persons with ABI as well as a range of possible solutions, and we hope it will form the basis for improving post-acute care after acquired brain injury.