Barriers to Independent Living for persons with TBI

Published April 24, 2022

People with traumatic brain injuries, or TBIs, often experience many barriers to independent living. Whether facing seizures after a TBI or relearning basic skills, like dressing and eating, individuals with TBIs encounter physical and psychological symptoms that impact most everyday life.

Traumatic brain injuries can be unpredictable, made more complicated with inaccessible methods for recovery. We explore some of the most significant accessibility barriers for those with TBI and the future of TBI health aids.

TBI obstacles in everyday life

TBI, or traumatic brain injury, is an injury to the brain resulting from a bump, jolt, or penetrating injury to the head. Common TBI causes include sports or motor vehicle accidents, slips, falls, and attacks. 

Of the around 1.7 million people suffering from TBIs annually, most cases are mild (also known as concussions), while about 10 percent of cases are severe.

While mild TBIs may not require hospital visits and typically result in full recovery, those with moderate and severe TBIs may confront a lifetime of challenges.

Every traumatic brain injury is different, but lifestyle changes seem to be the most immediate and enduring shift depending on the severity. For example, people with long-term effects from a TBI have to rethink their mobility and daily tasks such as walking, working, and interacting with others. 

People with TBI often report its challenging effects extending beyond the individual into their families. This fact is especially true for many TBI sufferers who require caretakers who are typically close family members or hired aid.

TBIs are sometimes referred to as "family issues" because their effects on a person often ripple out to those close to them, whether due to an increased need for everyday help or the mental strain caused by the TBI.

Mental effects

TBIs can have short and long-term mental effects, including memory loss, impaired reasoning, difficulty expressing and communicating, balance issues, depression, anxiety, and more. In addition, people often report extreme hardship in their interpersonal relationships due to newfound communication issues resulting from their TBI.

Brainline, a site dedicated to those who've experienced brain injury, shared direct quotes from recent TBI sufferers. Those with brain injuries expressed intense feelings of depression, grief, and loss, using analogies like puzzles and scrambled eggs to describe the new state of their cognitive skills.

Others expressed feeling like a different person or being treated like one, "I look the same, but I feel like someone else," a person named Ann-Michel explained. 

Statistically, 1 in 5 individuals experiences mental illness up to six months following traumatic brain injury. Additionally, studies suggest that 71% of TBI sufferers show signs of heightened irritability. Families of people with TBI report their loved ones to have frequent mood swings, shortened tempers, and trouble with anger management.

Irritability may result in physical violence from the TBI sufferer towards loved ones and family members. While this is not the case for all people with TBIs, the fear of a shift in behavior from individuals and their loved ones proves difficult for many.

Anxiety surrounding TBI stereotypes persist. Those with TBI report negative expectations about brain injuries leading to a lesser likelihood to disclose their TBI.

Physical barriers

Physical barriers to a TBI can include chronic headaches, bladder and bowel difficulties, sensory impairments, muscle weakness, and even temporary or long-term paralysis. Overall, a brain injury can often affect someone's daily mobility.

People with varying mobility-related disabilities frequently face inaccessible transportation, buildings that do not meet ADA requirements, and housing that falls short of meeting their new accommodations.

While some accommodations require local government involvement, like more accessible sidewalks, public transportation, and entryways to public buildings, other accommodations are left up to the individual or their caretaker to resolve. These changes, like renovating a home to be more accessible or necessary relocations, can be costly.

Medical Expenses

Some severe TBIs require rehabilitation or long-term care facilities, which can be pretty expensive. The U.S. National Library of Medicine reports that the lifetime costs of a TBI patient's treatment can run from $85,000 to $3 million.

Medical expenses are a barrier for many people with disabilities, but the struggle to keep up with payments can be debilitating for those with moderate and severe TBI. This is particularly true for TBI patients who are disabled and unable to work.

Of those with traumatic brain injuries, only 40 percent return to work after one year. Moreover, studies show that after three years living with a TBI, just 34% of participants lived stably employed.

Moderate to severe TBI can cause permanent physical or mental disability, leading to an inability to work and extremely difficult to cover medical costs.

This disparity in work paired with the high cost of living with a TBI helps explain the over 53 percent of marginally housed and homeless persons living with TBI today.

"It is becoming increasingly clear that TBI can be both a cause and consequence of homelessness," explained a Lancet Public Health Study on TBI.

Conclusion

Experiencing traumatic brain injury can dramatically alter the trajectory of a person's life, but new research shows promising progress towards better and more accessible treatment.

The National Healthcare for the Homeless Council currently provides resources and adapted clinical guidelines to healthcare providers interested in serving individuals with TBI. They are homeless or at risk for homelessness.

As the need for mental health gains cultural understanding and loses stigma, major corporations, employers, and the government are more likely to accommodate those with mental illness rather than discriminate.

Finally, a groundbreaking study showed that scientists are currently working on an injection that may dramatically reduce the long-term effects of moderate and severe TBIs. As researchers continue to find ways to improve TBI survivors' lives, we can look forward to a future when TBI-related long-term effects are significantly reduced.

 

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