The Gaps

Complexity of a brain injury

"If you've met one person with a brain injury, you've met one person with a brain injury" Unknown

Every brain injury is unique. There is a significant range of complexities. Not all persons with brain injury will require access to all aspects of care. Progression is not linear. The varied nature of brain injuries and the individual's response, results in a broad range of care requirements.

Factors that influence the complexity of brain injury:

Level of brain injury (location, Glascow Coma Scale, etc)

Socioeconomic status

Personal factors (intelligence, character, learning capabilities)

Pre-injury state (engagement in meaningful activities)

Support level (social relationships and family)

History of substance abuse

Criminal history

Relationships with family

Motivation/determination

Previous injuries

Environment

Insurance

Finances/income

Mental health

and more....

The range of this complexity has a direct impact on the services and resources that the individual needs.

Lack of knowledge

The Silent Epidemic

Brain injury is a major public health problem within the United States that is not well understood by the general public or health care professionals (BIAA, 2019). While there has been an increased awareness about concussion in sports and military head injuries, brain injury continues to be the silent epidemic.

How much do you know about the effects of brain injury?

There is a lack of knowledge/awareness within the community about the complex effects of brain injuries. Nobody ever thinks its going to happen to them. Could this happen to you? Brain injuries don't discriminate. Any one of us could acquire brain injury today, tomorrow, or the next day.

Brain injury survivors call themselves 'silent warriors' because often times their emotional, behavioral, and cognitive impairments are not always apparent. Neurobehavioral and personality changes are often considered to be the most problematic consequences of brain injury (Brain Injury Association of America [BIAA], 2019). Cognitive and neurobehavioral impairments have a direct impact on the individuals ability to perform essential ADLs.

"How do you explain something people can't see?"

Billy Golfus (Golfus & Simpson, 1995)

What resources exist for the silent warriors?

There is a lack of awareness of available services/resources. While there may be resources available for this population, how do people know they exist? For example, how would someone know vocational rehabilitation exists? Or legal aid? They won't know, unless someone tells them. Who is that person going to be?

Lack of Resources

Significant advancements have been made in research and services in the past 30 years for brain injuries. But consider the prominence of cancer in the media, as well as the resources generated as a result. It is clear that much more is needed to propel brain injury to the level of prominence it deserves.

Service Providers: There are very limited established service providers for this population. The fluidity and range of complexity in brain injuries means that these individuals need providers that understand their needs. There are limited service providers within the state of Oregon specifically knowledgeable in working with individuals with brain injuries.

Benefits Application: There is a lack of resources and services that assist with Social Security benefits application. The application takes ~2 hours to fill out and that does not include acquiring the proper paperwork that proves medical documentation of disability. Within Oregon, there are no lawyers or services that assist individuals from the start of this tedious and treacherous process. A lawyer will only get involved once the initial application and reconsideration has been denied. This is 5-6 months into the process. There needs to be resources put into place that support an individual navigating the Social Security application process.

Living Resources: There is a lack of living resources that support the goal of an individual returning to their own home and to be a contributing member of society. Too often when individuals are discharge from the hospital with very limited options they are placed in a residential care facility such as a skilled-living or group home. These institutionalized care settings are designed to provide care to older adults at the end stages of their lives (Bigby, Webber, & Bowers, 2008). The stagnation and restrictive nature of these facilities diminishes empowerment, autonomy and motivation resulting in decreased of quality of life, with one study referring to a skilled nursing home as an 'existential prison' (Dwyer et al. 2017). There needs to be more resources created that support an individual living the way they want, in a place of their choosing.

Lack of Resource Navigation

Should we expect brain injury survivors and their families to navigate the many complex and siloed systems?

How hard would you try if you were constantly running into barriers and being told that they can't help you?

Brain injuries are a catastrophic, life-altering experience for individuals and their families. Without warning, there is a critical need for communication, support, answers, and reassurance. There is an emerging need for thorough and comprehensive guidelines to address medical, rehabilitation, and other present and future concerns (BIAA, 2019).

No one professional or service will ever meet all the needs an individual or family has after a brain injury. Creating a network of local referral sources is an essential part of brain injury care. There are no established organizations or services within Oregon that help these individuals get the resources they need.

Many states such as Minnesota, Iowa, Wisconsin, and Nebraska have privately or publicly funded programs tailored to helping this population navigate the resources.

Lack of life-long support

Neurobehavioral changes such as aggression, agitation, apathy, disinhibition, impulsivity, lability, and poor judgement following a brain injury are common. These changes contribute to the individuals relationships and support systems, and often times opportunities disappear, resulting in loneliness and isolation (BIAA, 2019).

Brain Injury, A Chronic Disease

A brain injury is not an event or a final outcome. If a broken brain was the equivalent of a broken bone, the final outcome would be fixed given some treatment and therapy. It is the beginning of a chronic process. Rehabilitation following a brain injury is not a static process. It is a chronic & dynamic condition that will affect the individual for the rest of their life.

"When I was first injured, I was overwhelmed by the show of support from friends and family. After only one year, I haven't had contact from any friends or family in several months"

- Brain injury survivor

Support is a major predictor of rehabilitation potential and functional outcomes after a brain injury. There is an immense amount of support while in the acute phase of rehabilitation. You have care managers and health professionals ensuring that every one of your basic survival needs are met. But once the individual is home or out in the community, who supports them? If they have support from friends or family, how long will they be around? Is that support life-long? Who supports your caregiver?

The Burnout

During the post-acute phase of brain injury rehabilitation, there is an increased dependence on caregivers in nearly all facets of the individuals life. Caregivers of individuals with brain injury experience high rates of burnout, depression, fatigue, anxiety, lower subjective well-being, and poorer levels of physical health (Kreitzer, Kurowski, Bakas, 2018). These negative outcomes do not only impact the caregiver, but the family as a unit. Caregiver burnout is related to increased survivor disability, survivor unemployment, and survivor substance misuse (BIAA, 2019). Everyone needs support, including caregivers. Supporting caregivers and family members is essential to rehabilitation following a brain injury. Without it, the brain injury survivor will not succeed.

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