Spotlight on the Safety Net

Traumatic brain injury (TBI) is a major and growing public health problem in North Carolina. Individuals who have experienced a moderate to severe TBI require a continuum of care involving acute hospitalization and post-acute rehabilitation; the latter should include community reintegration that, ideally, allows them to return home and to function as a productive member of the community. Specialized clubhouse/day programs are one model of community reintegration that has demonstrated some success.

A brain injury clubhouse is a community center for people living with the effects of TBI. The clubhouse is based on a model that has been recognized for more than 70 years. In 1948, Fountain House was founded on the premise that clubhouse members could work productively and have socially satisfying lives in spite of mental illness [1]. Over the years, the clubhouse model has been adapted to accommodate other disability groups, including people with brain injuries. A clubhouse offers a safe environment where people are treated with dignity and respect. Table 1 provides online resources related to TBI clubhouses.

A clubhouse focuses on abilities rather than disabilities, and it capitalizes on these abilities for the combined good of all members. Each member of the clubhouse is recognized for his or her contribution, no matter how big or small that contribution is. There are no “patients” in the clubhouse. Members work together to support each other in their pursuit of personal goals. In the process, people develop the skills and self-esteem needed to regain control of meaningful and productive lives. The clubhouse encourages community re-entry, the rebuilding of social relationships, and the development of skills required for productive activity. The clubhouse model is divided into 4 main areas: work-ordered day (which consists of units such as kitchen and business), employment, education, and evening/weekend activities.

The brain injury community had adopted the clubhouse model over the past 15 years, and a group of clubhouse providers founded the International Brain Injury Clubhouse Alliance (IBICA) in 2004. The foundational concepts of these programs have been built with TBI-specific modifications to accommodate persons with brain injury. This provided a strong foundation from which to build a new, modified program for TBI clubhouses in North Carolina.

In 2009, the North Carolina Division of Mental Health, Developmental Disabilities, and Substance Abuse Services (MH/DD/SAS) received a grant from the federal Health Resources and Services Administration that included funding to provide technical assistance for the development of 2 clubhouse programs designed to serve people with TBI. MH/DD/SAS contracted with the Brain Injury Association of North Carolina (BIANC) to develop these 2 clubhouses using best practice guidelines.

BIANC provides information and referral services for people with brain injuries, their families, and professionals. Inquiries for support have indicated a dire lack of services for this population for many years. One particular concern is the lack of day programs that allow people to lead active, productive lives. Psychosocial rehabilitation clubhouses are available throughout the state for individuals with mental illness and other disabilities. However, in 2009 there was only 1 clubhouse program in North Carolina that served people with brain injuries: Hinds’ Feet Farm in Huntersville.

BIANC developed relationships with 2 provider agencies—Hinds’ Feet Farm in Asheville and Community Workforce Solutions in Raleigh—to provide the direct services for the TBI clubhouses. BIANC and the 2 providers visited several TBI clubhouses in Virginia, drop-in centers in South Carolina, and a well-established clubhouse in Atlanta to observe and learn from existing successful programs. Community Workforce Solutions developed Gateway Clubhouse in Raleigh based on this research and over 40 years of working with persons with disabilities. Hinds’ Feet Farm had previously developed a TBI day program in another area of the state, and they modeled their second clubhouse on their existing site.

In designing Gateway Clubhouse, Community Workforce Solutions made the decision to join the IBICA and to adhere to those defined guidelines. The Hinds’ Feet Farm Clubhouse chose to follow another model of brain injury clubhouse design. Hinds’ Feet Farm shares far more similarities than differences with the 33 standards of the IBICA, but Hinds’ Feet Farm replicates the Stepping Stones Day Program, a program of the Krempels Center in Portsmouth, NH [2]. Stepping Stones, founded in 2000, is based on the concept of creating a place that is welcoming, with a predominate focus on holistic health and wellness, versus the clubhouse’s primary focus of work-ordered days and employability. MH/DD/SAS believes that providers can chose the clubhouse model that best suits their population based on their business model, as long as consumer satisfaction is maintained. Once a clubhouse is opened, providers must justify the program with documentation in order to receive continued funding from the state.

Both TBI clubhouses have been successful in establishing programs that have greatly benefited people with brain injuries and their families. Quarterly assessment reports indicate that the members of both clubhouses have found that they provide positive, life changing programs. The benefit of the clubhouse program is best reflected in this statement from a new member: “I just recently began coming to Gateway, and everyone is so accepting. Everyone understands that accidents happen and we are all unique.”

There is a well-documented need to develop more TBI clubhouse programs in North Carolina. BIANC, the North Carolina Brain Injury Advisory Council, and other brain injury advocacy groups are working together to expand the availability of these valuable programs across the state.

• ©2015 by the North Carolina Institute of Medicine and The Duke Endowment.