Given an estimated 225,000 Californians living with traumatic brain injury (TBI), it’s hard to understand how the signs of TBIs can be missed, misinterpreted or simply ignored. And yet, they are. The most common TBIs are concussions, nearly 3.8 million of which are caused by sports and recreation activities in the United States annually, as reported by the Centers for Disease Control and Prevention. Norma Vescovo, founder and Chief Executive Officer (CEO) of the Independent Living Center of Southern California, Inc. (ILCSC), has seen an increase in the number of TBIs, including concussions or mild TBIs, at ILCSC and fully understands why TBIs are often missed.
“The majority of individuals who come to ILCSC don’t realize they have an injury because TBIs, like concussions, can’t be seen,” said Vescovo.
Initially, individuals may experience any one of a number of symptoms, including confusion, concentration difficulties, dizziness or, most commonly, memory loss, all of which are also experienced by people who don’t have a TBI.
“In addition to the typical symptoms, people often experience increased anger and frustration as they try to figure out what is wrong with them, but don’t associate this with the TBI,” explained Vescovo. “Nor do their families and friends code the behavior as being associated with the TBI. The unspoken expectation is that an individual with a brain injury will return to his or her ‘normal’ behavior, but he or she doesn’t. And this is where Independent Living Centers (ILCs) can help.”
Serving individuals living with disabilities, older adults and military veterans throughout Southern California, ILCSC, similar to other ILCs, provides a wide range of support and services to individuals living with a TBI. Some of these include evaluations, vocational and independent living skills training, housing assistance, assistive technology, support groups and job coaching and placement.
ILCs also work closely with other organizations and providers in educating the community on the challenges, barriers and options for people living with disabilities.
“In the case of TBIs, educating the community is particularly important,” states Vescovo. “Because TBIs are often misunderstood, it is critical to make the community aware of the nuances of such disabilities in order to better serve the individuals who live with them.”
Therapy Services Supervisor for Acute Rehabilitation for Mercy General Hospital Lynda Eaton, PT thinks the stigma of having or being associated with a TBI is the biggest barrier to increasing awareness. Eaton believes that eliminating stigma is particularly difficult given individuals with TBIs are not happy to broadcast that they have a TBI because they don’t want to become labeled as unintelligent.
As co-chair of Sacramento’s Walk For Brain Injury, Eaton said, “We don’t get the turnout you see with breast cancer and other diseases where people come out in tens of thousands with advocacy representatives. The brain injury community is different. Fewer people with TBI or their family members want to join the cause and be advocates. The stigma is so significant.”
Eaton continued, “ILCs are not only our connection to services for people with TBI, such as low-cost housing and case management, but we rely on them for advocacy as well. If anyone can convince our clients to advocate for themselves, it’s the staff at ILCs.”
Source: The California State Independent Living Council