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The Brain Injury Clubhouse Model: Bridging Stability to Function

Categories: Living with Brain Injury, Public Awareness

By Valerie Gotcher, M.S., CCC-SLP, Brain Injury Network of Dallas

Brain injury affects the day-to-day challenges of seemingly simple tasks, like making a cup of coffee, sending an email, or saying “I love you,” for more than three million Americans who have traumatic brain injuries or strokes each year.

Although many individuals with brain injury receive life-saving medical care and rehabilitation services, forty percent of Americans hospitalized annually with traumatic brain injury have at least one unmet need for services one year after injury – long after coverage for medical rehabilitation has ended. These include improving memory and problem solving, managing stress and emotional upsets, controlling one’s temper, and improving one’s job skills.

Perhaps even more devastating for brain injury survivors is social isolation, made more impactful by lack of return to work, where we tend to spend most of our time with others. Considering that less than half of persons with brain injury successfully reenter the workforce and that rates of depression rise as the years pass, it is evident that there is a gap in services. Rehabilitation professionals, concerned family members, and persons with brain injury struggle with these challenges.

In the early 2000s, advocates banded together and found inspiration at Clubhouse International. Clubhouse International is an organization dedicated to providing support in the community for adults with serious mental illness. Much like persons with brain injury, people living with serious mental illness oftentimes face difficulty returning to their communities after the hospital and must navigate continued services on their own.

The Clubhouse International philosophy was established more than 70 years ago and has since grown to more than 300 mental health clubhouses and 17 brain injury clubhouses around the world. Those working with brain injury survivors formed the International Brain Injury Clubhouse Alliance (IBICA). IBICA received its formal identity in 2005 and its member clubhouses currently extend from as far east as New Jersey, north to Canada, and as far west as Texas.

IBICA is a nonprofit membership organization that supports the development, training, quality, and stability of Brain Injury Clubhouse programs across the United States and Canada. IBICA serves as the primary advocate for the adaptation of Clubhouse International standards of operation, which have been successfully applied within the mental health community since the flagship location opened in New York in the 1940s.

The mission of IBICA is to support and advance an international collaborative network of standards-based Brain Injury Clubhouses for people impacted by brain injury.

Brain injury clubhouses exist to support the realization of meaningful and productive life in the community after acquired brain injury. A brain injury clubhouse is a place for adults with brain injury who no longer receive traditional medical rehabilitation but find no resolve in staying home without a sense of purpose. Although each Clubhouse program bears its own unique identity and funding sources, the following core values are consistently honored:

  • The Power of Membership: At the Clubhouse, survivors of brain injury are considered Members, not patients, and thus claim responsibility for making program decisions and directing the daily operations of the Clubhouse. Membership is empowering and provides each person with the confidence needed to reenter the community and live more independently. Members understand that their contribution to the program is needed.
  • The Work-Ordered Day: The Clubhouse day is structured around meaningful work in a work unit. Members choose to complete tasks that directly support the operations of the Clubhouse – from training volunteers to advocating for brain injury services, writing a newsletter article, cleaning the facility, or preparing lunch. Members are encouraged to solve problems and control the sequence of projects within work units, leading to improved cognitive skills.
  • Peer Relationships: Members work side-by-side with staff at the Clubhouse and interact with staff and volunteers as peers. Through this relationship, Members receive necessary support while still maintaining ownership over their service planning at the Clubhouse. For many Members, friendships that develop within the program are the most valuable piece of recovery and strongly impact quality of life.
  • Lifelong, Voluntary Membership: Clubhouse membership offers survivors of brain injury consistent, long-term support that is available for as long as the Member needs or desires. Many brain injury clubhouses do not rely on typical insurance (nor its limitations) and instead supplement program income through fundraising efforts. Lifelong membership also supports hope for continued brain healing long after traditional medical supports have been exhausted.

Recently, a Brain Injury Clubhouse Member shared this with IBICA: “I truly believe that if it wasn’t for the Clubhouse, my condition would have steadily worsened. Instead, I found this to be a safe place and an organization where the people will accept me for who I am: emotionally broken, anxious, confused, and worst of all, scared. The Clubhouse was the only place besides my home that I felt safe. Being by myself day after day was a pathetic and awful existence. But because of the Clubhouse, I am now going to embark on something that is incredibly important to me – educating and generating greater awareness about brain injury and its consequences.”

IBICA appreciates the opportunity to answer additional questions about its history, mission, vision, and especially values inquiries from community groups interested in starting their own Clubhouse programs. Please click here for additional information, to send an inquiry, or to find a Clubhouse program near you.

IBICA programs track outcomes and are pleased to share the following:

  • Brooks Clubhouse in Jacksonville, Florida, has served more than 300 persons with brain injury since opening in 2008 and has helped 71 Members reenter the workforce.
  • Synapse House in Elmhurst, Illinois, houses a social enterprise bakery “Flour to Empower” run by its Members and 56% of Member families report improvement in caregiver burden.
  • ADAPT Clubhouse in Alexandria, Virginia, reintegrates 100% of Members back to the community through volunteer work at a homeless shelter, a nursing home, a community garden, and the local farmer’s market.
  • Brain Injury Network of Dallas (BIND) in Plano, Texas, provides wellness activities five days a week and 76% of Members report stable or improved quality of life after attending the clubhouse for four months.

This article originally appeared in Volume 12, Issue 4 of THE Challenge! published in 2018.