Because of greatly improved medical, pharmaceutical and nutritional expertise and practices, many Americans are living longer lives with better health and fewer disabilities. However because of these same advances, a new and growing cohort of people has emerged—younger individuals with severe disabilities, including those with brain injuries. Unfortunately, community perspectives toward providing necessary support and services for this cohort have not changed. As an Area Agency on Aging, CICOA must encourage setting new standards that recognize this population and advocate for the creation of laws, services and organizations to address their needs now and in the future.
Any injury to the brain that has occurred after birth is considered an acquired brain injury (ABI). Usually definitions state that acquired brain injury is not related to congenital defect, degenerative disease or birth trauma. Traumatic brain injury (TBI) is one form of acquired brain injury. However there is no universally accepted legal definition of brain injury. Each state may define brain injury differently according to the state’s Medicaid program qualifications.
The chart below gives several examples of brain injury and its causes. This list is not exhaustive.
What causes brain injuries?
- Traumatic forces to the head, called traumatic brain injury
- Physical abuse: shaken baby, spousal
- Accidents: falls, vehicular, sporting
- Bleeding in the brain or intracranial hemorrhage
- Infections in the brain
- Viral or bacterial
- Sinus abscesses
- Lack of oxygen to the brain
- Near drowning
- Heart attack
- Near suffocation
- Extremely low blood pressure
- Tumors: benign or cancerous
- Hydrocephalus or fluid build-up in the brain
- Toxic exposure
- Lead or mercury poisoning
- Solvents and fuels
- Carbon monoxide
The Centers for Disease Control and Prevention assembles statistics for TBI that don’t include other types of acquired brain injury. Indiana does not collect or publish any data on brain injuries that occur in the state. As a result, the Indiana data represented below has been extrapolated from national statistics based on population ratios.
TBI: A major cause of death and disability
- TBI contributes to about 30% of all injury deaths in the United States.
- Every day, 138 people in the U.S. die from injuries that include TBI.
- Survivors of TBI may have disabilities that last a few days, months or an entire lifetime.
- Effects of TBI can include:
- Impaired thinking and/or memory (cognitive disorders)
- Movement disorders including paralysis
- Inability to speak clearly
- Sensation disorders: vision, hearing, taste, touch, smell
- Impaired emotional functioning and mental health issues
- Hormonal imbalances
|TBI Data (annually)||USA||INDIANA*||CICOA*|
|Emergency Department Visits||2,200,000||44,000||11,880|
The above TBI data and more detailed information are available on the CDC website: http://www.cdc.gov/traumaticbraininjury/get_the_facts.html
*Indiana and CICOA data was extrapolated from national estimates based on population.
The National Institute of Neurological Disorders and Stroke estimates the number of people who are living with the challenges of long-term, TBI-related disability in the U.S. to be 5.3 million people. Based on the 2010 U.S. census, the number of people living in Indiana and in CICOA’s service area who struggle with long-term disability related to TBI are shown below.
People living with long-term disability due to TBI
These figures represent disability caused by TBI only, not disability caused by stroke, brain tumors or other acquired brain injuries.
Indiana Brain Injury Long-term Care Services and Supports
Indiana provides excellent acute hospital and short-term rehabilitative care, which is the level of care that most people with brain injury need to return to active participation in their communities. For others, however, a brain injury can be the beginning of a continual struggle to regain a normal life. Some will need intermittent supports and services while others will need continual care throughout their lives. Indiana does offer some long-term services for people with brain injury. However, none of the services are tailored to the needs of people living with brain injury, and there is no specialized brain injury care training required for the providers of the following services:
- Long-term services and supports delivered in nursing homes.
- Home- and community-based long-term services and supports (HCBLTSS) delivered through the 200 state-wide slots available on the TBI Waiver. (The waiver uses a strict definition of TBI.) The Aging & Disabled (A&D) Waiver provides standard services for others with brain injuries. (If the brain injury occurred before the age of 22, then one might have access to the waivers for people with developmental or intellectual disabilities.) Besides being delivered in the home, waiver services also can be delivered in these community settings:
- Adult day care programs created to care for the elderly and people with developmental and intellectual disabilities (DD/ID).
- Group homes designed for people with developmental and intellectual disabilities. The DD/ID Waiver programs allow people to “bundle” services, which allows them to share caregivers and many services. The TBI or A&D Waivers do not allow “bundled” services.
- Adult family care homes geared to the elderly.
- Assisted living facilities are officially available to people with brain injuries; however most facilities require a person to be age 55 or older and none have programming designed for people with brain injury.