Brain Injury Services
Clubhouse
Introduction
People with brain injuries face a lack of opportunity in Victoria, BC. Those trying to access healthcare, housing, vocational opportunities, social supports and educational opportunities are faced with multiple systemic barriers. After a person recovering from a brain injury has been through medical/physical rehabilitation and is in the process of rebuilding her or his life, s/he is faced with a handicapping lack of opportunity to work, to contribute to their community and to be socially included. Those accessing services generally have little input into the norms, values and perspectives of the models or institutions implementing them. Furthermore, people with brain injuries have special needs that can be invisible and/or difficult to accommodate. Better outcomes are available through participatory programming that offers a range of flexible opportunities and supports. (Cope, Mayer, & Cervelli, 2005; Ragnarsson, 2002).
The clubhouse model has been used by people with mental illness since 1948 and is considered a best practice for providing vocational support, social inclusion and community integration for people with significant mental illness (Beard, Propst, & Malamud, 1982; Di Masso, 2001; Macias, 2001; C. Macias et al., 2006; Norman, 2006; Schiff, 2008; Sweet, 1999). The model has more recently been applied to the brain injury population. Use of the clubhouse model for people with acquired brain injuries is now considered to be a cost effective best practice (DeMello C, Jacobs H.E., 1994; Jacobs H.E., DeMello C., 1994; Jacobs H.E., DeMello C., 1995).
The Clubhouse Model
A Clubhouse is a place where people can go to access the support they need to learn, build capacity, create meaning, find purpose and enhance their quality of life. While rehabilitation happens at a clubhouse, rehabilitation is not the focus of a clubhouse, instead it is a place where people can learn, grow and find meaning. Here participants are ‘members’, not ‘patients’ or ‘clients’. This is not just terminology; clubhouses are structured so that members participate in governance and all aspects of operations. Not only does this provide members with structural power, it places value on their assets, capacities and abilities. Here “each member is a person with unique skills, talents, goals and needs, who at some point in time also experienced a brain injury” (Jacobs & DeMello, 1996, p. 171). This expectation is supported by minimising staffing so that the participation of members is required for the clubhouse to function. Generalist staff occupy a facilitative capacity building role. Not only are costs kept low by this approach, but more importantly it provides members with an authentic level of responsibility.
In the following paragraphs, Jacobs and DeMello outline several ways that a clubhouse is well suited to brain injured populations. In traditional rehabilitation, the relationship between therapist and client is commonly based on the client’s deficits. It is common for a person to lose contact with family and friends after a brain injury, which places the therapeutic setting as a person’s primary source of social interaction. However, when a patient gets better the therapeutic relationship ends. This has the unfortunate consequence of reinforcing a self-identity that puts disability at the forefront and at the same time provides a disincentive to overcome impairments. Conversely, a clubhouse provides an opportunity for social inclusion where contact is under each members control and does not necessarily end when a person develops capacities and increases independence.
A clubhouse provides a normative context for interaction. The work ordered day is the vocational preparation program through which members learn employable skills by operating the clubhouse. Participation is voluntary, work is chosen by the member and feedback is provided primarily through peers. Christina Norman (2006) looks at how members of a mental health clubhouse use their clubhouse to create change in their lives. In terms of work tasks, she finds that two conditions are important to members; the work task has to be needed, necessary, and meaningful and to be a part of a wider context. Furthermore, “as in any work environment people engaged in productive activities of their choosing are likely to have something in common with their peers” (Jacobs & DeMello, 1996, p.172). Just as many people create friendships at their places of work, clubhouse interactions create opportunities for social inclusion both inside and outside the clubhouse. A clubhouse creates a milieu where people genuinely care and support each other. This milieu in turn adds to the normative context by creating social pressure to contribute and to support others.
Concepts such as using positive behavioural supports utilized in a person-centred context to facilitate individual life goals is now seen as one of the last in a series of innovative rehabilitation interventions. These concepts utilize applied behaviour analysis, apprenticeships, contextual and environmental modifications, and social constructs such as TBI “clubhouses” to create meaningful life experienced for the person with TBI… They also are reported to be more effective and efficient than more traditional clinical institutional based interventions. (Cope et al. 2005, p. 133 )
People with brain injuries often learn more slowly and/or need time to make changes in their lives. A clubhouse is oriented to provide long-term support, which allows for change and growth to occur over realistic time periods. Furthermore, brain injured learners tend to learn best experientially in the context they will apply their learning. A clubhouse provides contextualized, experiential learning opportunities. “It is one thing to learn how to type a letter on a word processor in a structured class and quite another to do so in a noisy office environment where five people are trying to get work done on three computers!” (Jacobs & DeMello, 1996, p. 172)
A clubhouse seeks to supplement rather than replace community involvement. “Clubhouses rely on local community resources for their operations, from daily shopping, to transit, to professional services. Within their financial means, members live in housing of their choice and patronize local businesses” (Jacobs & DeMello, 1996). Before developing its own resources, a clubhouse will work with community partners to improve resources for the entire community. Community involvement is also encouraged through clubhouse employment programs. Members are not paid for their work at the clubhouse, so members who have the capacity to do paid work are supported to find these opportunities in the community.
Many individuals with significant impairment and a history of failure in traditional rehabilitation could establish successful community tenure, vocational outcomes, and personally relevant support networks when given the opportunity and responsibility to create services and supports according to their personal priorities. (Ylvisaker et al., 2003 p. 12)
Clubhouse operations fit the goals and orientations of its members because “members are involved in all decisions that affect the course of the program and have rights to participate in all program activities, including budgeting, long range planning and policy meetings. This assures that the program adapts to its members, rather than members having to adapt to the program” (Jacobs & DeMello, 1996, p.173) . Each member is responsible for their participation and the decisions they make. This has particular relevance in the area of goal setting. “Because members retain responsibility for their outcomes, there is less attribution for failure to others if a goal is not attained” (Jacobs & DeMello, 1996, p. 173). Furthermore, it is the staff person’s role to help a member find, develop and create the resources they need to achieve the goal, not to achieve the goal for them. In this way, members are responsible for their failures which present opportunities for honest reflection using unbiased feedback for increasing self-awareness. Moreover, members are also responsible for their successes and can celebrate knowing that they achieved their goal using resources that they developed and that continue to be available to them. To the individual, this means that success is repeatable. Another important aspect of this approach is that a staff person can measure his or her success not in terms of what goals a member achieves but in terms of what resources and capacities they facilitate a member to develop. This frees staff from the role of imposing limiting or ‘realistic’ constraints on members’ ambitions.
It is important to note the limitations of the clubhouse model. “A clubhouse is not designed to take the place of acute and intensive rehabilitation services, nor can it serve as a substitute for individualized therapy and treatment when such assistance is needed. However, in some cases a Clubhouse may offer functional alternatives to such services. Jacobs & DeMello, 1996, outline several features of a successful clubhouse. In order to facilitate sufficient diversity for a rich social milieu, clubhouses should have no fewer than 15-20 members per day. Successful clubhouses tend to be in communities larger than 100,000 people and have access to good public transportation. Staff orientation towards a facilitative role, rather than a directive one, is important. Lastly, it is essential for each program to follow clubhouse standards as outlined by the International Center for Clubhouse Development (ICCD) or the International Brain Injury Clubhouse Alliance (IBICA). “These standards are critical to Clubhouse success. To date, only those Clubhouses operated by and for people who experience disability following brain injury that adhered to these standards have been successful. Other ‘hybrid ‘programs have failed” (Jacobs & DeMello, 1996,p.174). The size and accessibility of Victoria make it an ideal city for a clubhouse.
Clubhouses are cost effective because they draw on existing community resources and on high levels of member involvement. This makes clubhouse programs feasible to operate over the long-term and therefore meet long-term needs of people with acquired brain injuries. Furthermore, clubhouses are significantly less expensive than other program models (Clark, Xie, Becker, & Drake, 1998; Cowell et al., 2003; Macias, 2001; McKay, Yates & Johnsen, 2007;).
Social costs of Acquired Brain Injury
There is a high prevalence of brain injury preceding mental illness, addictions, homelessness, criminal behaviour, domestic violence, and poor health outcomes. By addressing the needs of people with brain injuries, much of the tragic out fall and associated cost can be mitigated.
Many psychiatric disorders are precipitated by a brain injury (Burg, 1996; Burg, 2000; Hibbard, 2000). The link between mental illness, addictions and homelessness is well established; however, neurological based cognitive impairments play a significant yet under appreciated role in this nexus (Backer & Howard, 2007; Buhrich, 2000; Douyon et al., 1998; Hwang et al., 2008; Simpson, 2005; Spence, 2004; Walker, Hiller, Staton, & Leukefeld, 2003)
A survey of homeless people in Toronto shows that 53% of participants in the survey had experienced a brain injury and 70% of these participants experienced their brain injury before becoming homeless. Figure 1 is from (Hwang et al., 2008). These findings suggest that acquired brain injury is a significant contributing factor to homelessness. The premise behind this research is that by recognizing brain injuries as a significant causal factor in homelessness we can better address homelessness. Presumably, with appropriate treatments, rehabilitation, supports, accommodations and opportunities for people with brain injuries, these individuals will be less likely to find themselves homeless.
For example, a member recently moved into his own housing for the first time since experiencing brain injury. He was able to make this move because he recognized that no problem he was likely to experience in his apartment would be so great that it could not wait until the next day to be solved at the Clubhouse. It is unlikely that he would have been successful without this type of support. (Jacobs & DeMello, 1996, p.172)
Acquired brain injury is associated with increased likelihood of seizures, mental health problems, drug problems, suicide, poorer physical health status and poorer mental health status (Burg, 1996; Hibbard, 2000; Hwang et al., 2008; Langlois, 2006; Simpson, 2005). Providing healthcare to homeless people is challenging for a variety of reasons, including challenging behaviours and other unrecognized sequelae of traumatic brain injury (which include: cognitive impairment, attention deficits, disinhibition, impulsivity and emotional liability). These factors may have a significant impact on the healthcare they receive (Hwang et al., 2008; Langlois, 2006). With better access to preventive healthcare, addictions services and other social supports, healthcare and other societal costs can be mitigated (Backer & Howard, 2007; Moore, 2007).
Depression, impaired social functioning and various physical ailments are recognized as consequences of unemployment (Keyser-Marcus, 2002). However, medical costs are only part of the picture. In a study that looks at costs both in terms of medical costs and loss of productivity, loss of productivity represents 85% of the total costs of traumatic brain injury while medical costs only represent 15% (Finkelstein, 2006). Therefore, supporting people to return to work can significantly mitigate the total costs of traumatic brain injury. Moreover, there are other less tangible values associated with work life. Vocation plays an important role for people’s self-identity and self-worth and returning to work is a significant milestone for individuals whose work life has been interrupted by a brain injury (Keyser-Marcus, 2002). Not only are individuals returning to a source of income and independence they are returning to a valued societal role. For these reasons, vocational support for people with brain injuries can have significant benefit.
The human social and financial costs of crime can also be mitigated through supporting people with acquired brain injuries. There is a significantly higher prevalence of acquired brain injuries among incarcerated felons (for both men and women). Furthermore, as we find in homelessness, addictions and psychiatric disorders a high percentage of people’s injuries predate their criminal behaviour (Brewer-Smyth, 2004; Sarapata, 1998). The implication of this is that many crimes may be prevented if people with acquired brain injuries are given appropriate treatment and support (Sarapata, 1998; Slaughter, 2003). Preventing crime in this way seems cost effective given the high cost of incarceration compared with out-patient rehabilitation and community supports. If we factor in the loss in productivity and other costs of crime, we can save a lot of grief, suffering and money simply by providing what people with acquired brain injuries need.
Table 1 Daily Costs of Support, Care or Incarceration
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Type of Support
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Cost per Day
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Source
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Acute Care, Rehabilitation, or Emergency Hospital Bed
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$1100
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(Cridge, 2009)
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Federal Prison
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$ 219
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(Cridge, 2009)
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Licensed Care Facility with 24/7 Care
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$ 203
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(Cridge, 2009)
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Independent Housing with Support
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$ 120
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(Cridge, 2009)
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Clubhouse
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$58-$96
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(Fournier, 2009)
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The clubhouse model alone cannot address all of these issues; however, clubhouses are an effective complement to other care and support options for people with acquired brain injuries. A clubhouse can relieve pressure from more expensive supports by providing ongoing support to meet long-term needs.
Continuum of Care, Support and Opportunity
Support for the use of the clubhouse model with brain injury populations is best placed in a larger discussion about the need for better care, support and societal opportunities for people with acquired brain injuries. A continuum of support seeks to coordinate care, support and opportunities for the most effective use of resources, providing the best impact on individuals and society. These models seek to avoid the situation where some people receive too much of something they do not need while others are under served or are not being served at all.
The non-medical models are felt by people with TBI and their families, to be the most important final step to regain a level of community functioning, i.e., interaction with peers, support from community, resources, etc. These may include, supported residential living programs, independent living centers, clubhouse programs, rehabilitation within schools, and vocational rehabilitation. (Ragnarsson, 2002, p. 107)
Adequate housing, vocational opportunities, poverty reduction, educational opportunities and opportunities for social inclusion are cost effective because they reduce costs elsewhere in the social system (Backer & Howard, 2007; Bond, 1985; Di Masso, 2001; Dincin, 1982; Hwang et al., 2008; Kushel et al., 2002; McKay et al., 2007). Without adequate funding for inexpensive community-based interventions, such as a clubhouse, a coordinated continuum of care, support and opportunity is not possible and expensive medical model interventions will continue to be overused by individuals who do not need them, but cannot find services elsewhere.
Initiative
The Cridge Centre for the Family
The Cridge Centre for the Family is the oldest non-profit society in BC. It provides a range of services addressing the needs of families and individuals throughout the lifespan. Services include child care, housing for families in economic or relationship crisis, support for women and children who have been impacted by relationship violence, respite for family caregivers of people with disabilities, seniors’ assisted living and services for people with brain injuries. The Cridge Brain Injury Program includes: a ten bed licensed residence with 24/7 care, independent housing with shared support, support for individuals in their homes and in the community, and leadership for survivors and their families to develop networks of support.
The Cridge Brain Injury Program envisions itself as a leader in brain injury support in Victoria and is working towards developing a comprehensive continuum of care, support and opportunity for people living with the effects of a brain injury. This vision recognizes that support and opportunity provided outside of the medical model are important for Community Integration. There is a strong need for housing and community supports for people with brain injuries in Victoria, and these services are an important part of the Cridge’s vision. A clubhouse contributes to the success of these other services by providing ongoing support to individuals that adapts as their life circumstances change. As people become more independent and integrated into their communities, support needs also become more intertwined with the community. A clubhouse is well suited to meeting the ongoing support need of this dynamic and varied population.
This Clubhouse initiative has grown out of a pilot program started in 2006. The Cridge Centre partnered with Camosun College, private contractors and local businesses to provide vocational training, disability management and work opportunities to survivors of Brain Injuries. We saw encouraging success. Our participants demonstrated a great capacity to learn, develop their capacities and to work, their caregivers reported dramatic positive shifts and employers were impressed with the effects on their organizations. Unfortunately, we were not able to gain stability for this program through an ongoing funding regime. From the early days of this project we have been exploring ways to expand our successes and to bring opportunities for capacity building to a wider range of people with brain injuries. As outlined above, a clubhouse is ideally suited to this task.
Directors for several clubhouses were interviewed for this initiative. These Clubhouses include Cornerstone Clubhouse in London Ontario, Pathways Clubhouse in Richmond, BC and New Horizons Clubhouse in Port Alberni, BC. The following outcome forecast is based on these discussions.
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20 – 30 active members/day involved in the work ordered day program
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20-40 active members at any given time receiving vocational support.
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60-100 Active Members
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10-20 walk-ins/ week seeking information and referral.
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20-30 members/week participating in leisure and recreation programming.
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20-60 people/day served by nutritious meal program
Operating Budget
A clubhouse provides services that are typically ministered through the Ministry of Housing and Social Development, the Solicitor General and the Vancouver Island Health Authority. Furthermore, the social costs that a clubhouse addresses are born across many sectors and, within government, across many more ministries. For this reason the Cridge Brain Injury Program is seeking multiple partners from different areas of government and from multiple sectors.
Start Up Funding
The Cridge Centre for the Family is a registered charity and is seeking contributors to the one-time start-up costs for this program. These contributions play an essential role in establishing this program.
Advisory Board/Working Group
We are seeking individuals wanting to contribute to the success of the program. A working group will be established to secure funding and to guide implementation. Once the clubhouse is established the working group will be replaced by a more formal advisory group. The advisory group will be made up of survivors, family members and professionals and will guide this project - providing members and the community with a voice in the governance and operations of the program. The Cridge Centre is working to attract individuals with business and professional backgrounds to contribute to this project’s success.
Conclusion
Having explored a variety of service delivery options, the Cridge Centre for the Family is excited about the Clubhouse as a way of bringing a variety of needed supports and opportunities to people with brain injuries. The Cridge envisions a clubhouse as an integral part of a continuum of care, support and opportunity.
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