Brain Injury Alliance of Kentucky - An Informational and Educational Guide on the Issues of Acquired Brain Injuries
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Brain Injury Alliance
of Kentucky
An Informational and
Educational Guide
on the Issues of Acquired
Brain Injuries
Brain Injury Alliance of Kentucky
7321 New LaGrange Road
Suite 100 Resource Journal
2020-2022
Louisville, KY 40222-4853
502.493.0609
www.biak.us
For more information or to make a referral:
800-743-6802
neuroinfo@neurorestorative.com
neurorestorative.com
Rebuilding Lives After Brain Injury
NeuroRestorative Kentucky provides a continuum of post-acute programs and
community-based services for adults with brain injury and other neurological challenges.
Our experience-rich program settings in Louisville, Lexington, Ashland, Georgetown
and Paducah provide individuals with guided opportunities to improve their daily living
skills and successfully participate in community life.
• Neurorehabilitation • Day Treatment • Transitional Living
• Neurobehavioral • Respite • Outpatient
• Supported Living • In-Home
..................................................................................................................................
NeuroRestorative is located in 26 states throughout the United States.
Visit neurorestorative.com for information on specific program locations.
2 2020-2022 BIAK Resource Journal
ABOUT THIS PUBLICATION
“THE MISSION OF BIAK IS TO PROMOTE BRAIN HEALTH AND RECOVERY
THROUGH ADVOCACY, EDUCATION, PREVENTION AND OUTREACH.”
This journal represents the collective work of many people from across Kentucky
who devote their time in helping persons affected by an Acquired Brain Injury
(ABI) better understand what is happening and where they can look for assistance.
We use the phrase Acquired Brain Injury to represent any injury to the brain that
occurs after birth and is neither congenital nor degenerative. That includes brain
injuries from all accidents, assaults and abuse as well as, injuries that have a
medical cause such as brain tumors/cancer, strokes, aneurisms or any incident that
cuts off oxygen to the brain.
The information in this journal has been designed with you in mind. In the front of
this journal are articles that are intended to better equip you to handle brain injury.
In the back, you will find information about the many resources that are available
to you. We have placed important telephone numbers in the back and have
given you room to write down phone numbers that are important to you. More
information is always available from BIAK and you can reach us at 502-493-0609
or on-line at www.biak.us.
BIAK thanks all who have reviewed this article to make sure that the information
is complete and accurate at the time of this printing. We also thank our sponsors,
whose advertisements helped us produce this journal and be able to present it to
you as our gift. We also thank Ben and Sonia Ruiz at Adhawks for their faithful
efforts to design the layout and make sure that we have a good supply of journals
to distribute across Kentucky.
Eddie Reynolds, Editor
Brain Injury Alliance of Kentucky
7321 New LaGrange Road, Suite 100
Louisville, Kentucky 40222-4853
Phone: (502) 493-0609
www.biak.us
2020-2022 BIAK Resource Journal 3
The region’s
leader in
neurological care
At Norton Neuroscience Institute, our compassion
is renowned, and our expertise is recognized.
Becker’s Hospital Review named us one of 100 great
neurosurgery and spine programs. For innovation and
expertise in neurology, turn to Norton.
Learn more at NortonNeuroscienceInstitute.com.
After brain injury, rehabilitation is one of the most
important steps in the recovery process. Our hospital
offers innovative therapies, a specialized team and
advanced technologies to give patients the confidence
and strength they need to return to their community.
Cardinal Hill Rehabilitation Hospital Encompass Health Rehabilitation
2050 Versailles Road Hospital of Lakeview
Lexington, KY 40504 134 Heartland Drive
859.254.5701 • 800.233.3260 Elizabethtown, KY 42701
270.769.3100
encompasshealth.com
Brain Injury rehabilitation –
Life-changing results
©2019:Encompass Health Corporation:1522245P
4 2020-2022 BIAK Resource Journal
Table of Contents
Articles
About this Publication.......................................................................................................................................................3
The Brain: How it Works and How it is Injured............................................................................................................7
From ER to ICU.................................................................................................................................................................9
Helpful Responses during Recovery..............................................................................................................................12
Getting Ready to Come Home.......................................................................................................................................15
Measuring Brain Injury...................................................................................................................................................17
The Glasgow Coma Scale................................................................................................................................................17
Ranchos Los Amigos Cognitive Scale...........................................................................................................................20
Resource Section
Healthcare Resources.......................................................................................................................................................21
Federal/State Resources
Social Security Administration......................................................................................................................................24
SSDI and SSI.....................................................................................................................................................................24
What is Social Security’s Definition of “Disability”?...................................................................................................24
When Should I Apply for Disability Benefits?.............................................................................................................24
What Information Will I Need?.....................................................................................................................................25
How Do I Apply for Disability Benefits?......................................................................................................................25
What if My Claim is Denied?.........................................................................................................................................25
Will I Need an Attorney?................................................................................................................................................25
I was told that I did not have enough work credits for SSDI. Is there any other help?.........................................25
Disability.gov.....................................................................................................................................................................25
Your Local Social Security office...................................................................................................................................26
Medicaid............................................................................................................................................................................26
Medicare............................................................................................................................................................................26
Kentucky Programs for Persons with Brain Injury.....................................................................................................26
Acquired Brain Injury Medicaid Waivers: Acute and Long-Term............................................................................26
Home and Community Based Medicaid Waiver (HCB Waiver)...............................................................................28
Kentucky Transitions – Money Follows the Person....................................................................................................28
Michelle P Medicaid Waiver...........................................................................................................................................28
Supports for Community Living Medicaid Waiver (SCL).........................................................................................28
Crime Victims Compensation Board............................................................................................................................29
Traumatic Brain Injury Trust Fund...............................................................................................................................29
Community Living Resources
Assistance Kentucky.........................................................................................................................................................32
Department for Community Based Living DCBS.......................................................................................................32
Department for Aging and Independent Living (KY DAIL).....................................................................................32
Resource Guide.................................................................................................................................................................32
Selected Services...............................................................................................................................................................32
Caregiver Support Services – Kentucky...................................................................................................................32
Caregiver Support Services– National......................................................................................................................32
Brain Injury Support Groups/Stroke Club...............................................................................................................32
State Hart Supported Living Program......................................................................................................................33
Regional Hart-Supported Living Coordinators.......................................................................................................33
2020-2022 BIAK Resource Journal 5
Home and Community Based Waiver..........................................................................................................................34
Traumatic Brain Injury Behavioral Program...............................................................................................................34
Traumatic Brain Injury Trust Fund...............................................................................................................................34
Contacting Your Local Area Agency on Aging............................................................................................................34
Disability.Gov....................................................................................................................................................................36
Driving After A Brain Injury..........................................................................................................................................36
Employment After Brain Injury.....................................................................................................................................36
Higher Education Opportunities...................................................................................................................................36
Independent Living Centers...........................................................................................................................................39
Kentucky Assistive Technology Program.....................................................................................................................40
Kentucky Assistive Technology Loan Program...........................................................................................................40
Kentucky Aging and Disability Resource Center Directory......................................................................................41
Medicaid Waiver Program..............................................................................................................................................41
Transportation Services...................................................................................................................................................41
Resources for Children and Adolescents with Acquired Brain Injury:
First Steps: Children birth through 3............................................................................................................................43
Kentucky Children’s Health Insurance Program K-CHIP.........................................................................................43
The Commission for Children with Special Healthcare Needs.................................................................................43
Early Periodic Screening, Diagnostic and Treatment Services EPSDTS..................................................................43
KY Interagency Mobilization for Progress in Adolescent and Children’s Treatment IMPACT...........................44
Uspirius...............................................................................................................................................................................44
Michelle P. Medicaid Waiver..........................................................................................................................................45
Traumatic Brain Injury Trust Fund...............................................................................................................................45
Other Services...................................................................................................................................................................45
Educational Resources.....................................................................................................................................................45
Helping Your Child Return to School After a Brain Injury.......................................................................................45
RESOURCES FOR EDUCATION: U.S. Department of Education..........................................................................46
Kentucky Department of Education..............................................................................................................................46
Family Resource and Youth Services Centers (FRYSC).............................................................................................47
Kentucky Special Parent Involvement Network (KY-SPIN)......................................................................................47
Legal Resources:
Kentucky Protection and Advocacy..............................................................................................................................50
Legal Services....................................................................................................................................................................50
Locating an Attorney.......................................................................................................................................................51
Attorney Locators.............................................................................................................................................................51
Glossary............................................................................................................................................................................53
Important Phone Numbers...........................................................................................................................................57
For more information, visit BIAK website at www.biak.us.
6 2020-2022 BIAK Resource Journal
The Brain:
How it Works and How it is injured
• Balance
• Coordination
• Skilled motor activity
• Physical speech
The Occipital lobe is responsible for sight and is connected
to the eyes through the optic nerve.
The Parietal lobe sits on the top back of our head and helps
to interpret our world. It controls:
• Sense of touch
• Distinguishing size, shape and color
• Spatial perception – relationships between objects
Tit isheenclosed
brain is the main portion of the central nervous system,
• Visual perception – identifying people and objects
in the skull and is continuous with the spinal The Temporal lobe sits in the lower front and side part of
cord. The adult human brain weighs approximately three the brain (think temples) and it is responsible for:
pounds, is the size of a grapefruit, shaped like a walnut and • Memory
has the consistency of jell-o. • Emotions – especially fear
The brain is indeed the control center of the body. It controls • Hearing – understanding speech
our physical, mental and emotional functions. Although • Organization and sequencing
well protected, it can be injured by an accident like a fall,
or it can be injured through a stroke, aneurism, tumor or The Frontal lobe sits just behind our forehead and is
cancer. Even heart attacks can injure the brain by keeping responsible for the following functions:
the flow of oxygen enriched blood from flowing to it. • Initiation
• Problem solving
Many models exist to describe the brain. Some people • Judgment
describe it as a super computer responsible for receiving • Inhibition of behavior
and classifying information, then computing an outcome. • Planning/anticipation
others see it as a large symphony orchestra with each • Self-monitoring
section playing in concert with the others. Another way to • Personality/emotions
look at the brain is as an automobile engine: a collection • Awareness of abilities/limitations
of systems that must work together to operate properly. A • Organization
damaged brain is like a damaged engine, it may work, but • Speaking or expressive language
not efficiently, or it may not work at all.
The brain has six main parts: the brain stem, the cerebellum, How the brain is injured
the occipital lobe, the parietal lobe, the temporal lobe and Although well protected by the skull, surrounding tissue
the frontal lobe. Each part of the brain controls specific and cerebral spinal fluid, the brain can be injured in a severe
functions and works with the other parts of the brain in accident. The most common ways the brain is injured are:
order to perform even the simplest functions. bleeding, bruising and swelling; twisting or shearing and
loss of oxygen.
The Brain Stem is in the center of the brain and is connected
directly to the spinal cord. It controls all of the body’s Bleeding, bruising and
essential functions, receives and distributes all sensory swelling occur when the head
input. It controls our: strikes, or is struck by, a hard
• Breathing object. A Closed Head Injury
• Heart rate occurs when the skull is not
• Blood pressure broken; the brain, however,
• Body temperature is not only bruised and starts
• Sleep/wake functions to bleed at the site of impact;
• Our concentration it also slams into the opposite
The Cerebellum sits behind the brain stem and is at the back side of the brain and is bruised
and bottom of the brain. It controls: and bleeds there, too.
2020-2022 BIAK Resource Journal 7
This is called a coup/countercoup injury. The ensuing Physical Issues
bleeding and swelling can build pressure up in the enclosed A brain injury may affect the body’s ability to function.
skull and surgery may be required to relieve the pressure Examples of physical disabilities from brain injury include:
from the swelling. • They may tire easily and need frequent naps
• Balance issues that affect walking and getting around
An Open Head Wound is • A person may lose use of one side of their body
when the skull is fractured. A • They may lose their sense of taste and smell
Penetrating Head Wound occurs • They may have persistent headaches
when an object penetrates into • They may start slurring their words
the skull into the brain. In • They may be sensitive to light or sound
these situations infection also
becomes a concern.
Thinking or Cognitive Skills
A second mechanism of brain Common problems for people after brain injury are:
injury is twisting and shearing. • Short-term memory loss
This occurs when the head is twisted and shaken violently. • Inability to find or use the correct word – this is called
Although commonly associated with Shaken Baby Syndrome, aphasia
it frequently occurs in motor vehicle accidents where there • Problems organizing and sequencing for daily
was a lot of acceleration/deceleration and violent spinning. activities
This injury is called a Diffuse Axonal Injury. It is called • A slower mental processing speed
diffuse because it affects every area of the brain. Axonal • Initiating or beginning an activity
means that the long, tender axons which allow the neurons
to communicate are torn. This works to stop communication Emotional or Behavioral Skills
much like cutting a telephone wire. The person with an injury may act in ways they haven’t
before:
The third mechanism is an Anoxic Injury. This occurs when • Depression
oxygen has been deprived from the brain. This could be • Mood swings
suffocation, near drowning, strangulation and even loss • Explosive anger
of blood. The lack of oxygen to the brain causes brain cell • Inability to inhibit remarks
death. • Inappropriate behavior, such as flirting with women
• They may ask the same question repeatedly and forget
What can I expect? the answer
Although it doesn’t take long to get a brain injury, recovery • They may start doing things obsessively or
is often a long process. While the person is in the hospital compulsively
they will first be treated to make sure that further damage is
stopped and the person can survive the injury. The Glasgow The injured brain is like the non-injured brain in that no
Coma Scale allows medical professionals to accurately two are exactly the same. In brain injury the person may
communicate the level of coma the person has. The Ranchos never fully regain consciousness and remain in a vegetative
Los Amigos Scale helps to describe the level or stage of state, or they may return to near normal functioning. In the
recovery the person with the injury is making. early stages of injury, there is no way to truly foresee the
outcome.
Just as a brain injury may be mild, moderate or severe, a
person may recover with mild, moderate or severe disabilities. You can expect the most dramatic improvement in the first
A person may recover and need little to no assistance, they six months to a year. However, many brain injury survivors
may need moderate assistance to live independently or they report making progress many years after the injury – only
may need major assistance and need constant help. Some the changes will seem smaller because they will appear to
problems are evident early into the injury and others become be healed to people who do not know them well.
evident when a person returns home and has problems
adjusting to their injury.
You and the person with the injury can expect care and
Common Issues assistance with needs while in the care of a medical or
While a person may not know what to expect, there are rehabilitation hospital. The resource section of this journal
some issues that are common to most brain injuries. These will help you locate services you may need after you return
issues may affect a person’s thinking or cognitive skills; they home. Please feel free to call BIAK at 1-800-592-1117 or visit
may affect a person’s physical abilities or they may affect our web site at www.biak.us for more information.
the person’s emotional and behavior. Some of the problems
in these areas may be severe even if the injury to the brain
wasn’t.
8 2020-2022 BIAK Resource Journal
From the ER to ICU
The brain is the control center of your body. It controls and
coordinates all the bodies’ thoughts and functions. Examples
of these functions are: blood pressure, breathing, movement,
speaking and emotions. When the brain is injured the patient can
lose any of these functions. How this effects the patient depends
on what part of the brain is injured and its severity. When a
brain is injured it can bleed and swell up causing the brain to not
get enough blood flow. If the bleeding is not stopped and if the
swelling worsens, this puts pressure on the brain and the patient
can end up with severe brain damage. So a person with a suspected
brain injury will need immediate attention and taken to the closest
emergency department (ED).
A visit to the emergency department can be a terrifying experience
for the patient as well as the family. A patient who arrives in the
ED with a brain injury will need immediate care. The doctor will
want to know what part of their brain is injured and how bad it
is. They will want to start taking care of the patient’s injury right The nurses will monitor the patient’s blood pressure, heart rate
away. Early treatment can prevent further injury. The doctors and rhythm, temperature and how they are breathing. The patient
and nurses will have many questions about the events causing the may have an IV started so that the nurses can give the patient
injury and the injury itself. Answering a lot of questions can be IV fluids and medications if needed. The patient’s neurological
very frustrating especially when one is worried about their family, status will be monitored frequently to determine the extent of the
friend or loved one. Examples of these questions may be: If the patient’s brain injury and to watch for any changes. The doctors
patient wrecked on a bicycle, they will want to find out all of the and nurses use a scale, called the Glasgow Coma Scale (GCS)
details they can. Was the patient wearing a helmet? How fast were to monitor the patient’s neurological status. The scale scores the
they going? Did they flip over the handlebars? If the patient was patient’s best eye, motor and verbal responses (see bottom of pg.
in a motor vehicle crash, they will want to know if the patient was 11). The patient may respond by moving and positioning their
wearing a seat belt. How fast the car was going? Were they thrown arms and legs in a strange way. This movement is important in
from the car? Was it a frontal crash? Was it a side impact crash? evaluating the patient’s progress and whether further treatment is
Details such as these can help the doctors predict certain injuries. needed. Monitoring this scale often will alert staff of any changes
For example, if the patient wasn’t wearing a helmet and flipped in the patient’s condition. The changes could be good or bad. The
over the handlebars of the bicycle; in addition to their brain injury nurses and doctors will also shine a light in the patient’s eyes to
they could also have internal abdominal injuries. check their pupillary response. Changes in pupillary response can
tell the doctor of possible problems.
Patients with a brain injury often lose consciousness, or appear to
be in a deep sleep. Some will arrive confused and some will ask When a patient is diagnosed with a brain injury, a neurosurgeon
the same questions over and over. If they arrive like this, the staff is asked to examine the patient. A neurosurgeon is a doctor that
will want to know the patient’s normal behavior before the injury. specializes in brain and spinal cord injuries. The neurosurgeon
They will want to know if the patient got knocked out and for how will determine the extent of the brain injury and the best plan of
long? They will want to know if the patient is on any medications care.
and the patient’s past medical history. Do they have a history of
seizures? Do they have blood pressure problems? Do they have The doctors will order lots of tests. These tests include a blood
heart problems? Do they have a history of alcohol or substance test, x-rays, and a computed tomography scan (CT or a CAT
abuse? These types of questions can be embarrassing and difficult scan) and/or magnetic resonance imaging (MRI) of the head.
to answer but the truth will allow the doctors and nurses to take These tests are similar to an x-ray but allow the doctors to
the best care of the patient. The staff is not there to judge. They visualize more clearly internal structures of the head. The doctor
are there to help the patient and provide the most appropriate will be able to see if there are any skull fractures, bleeding and/
treatment. or swelling of the brain. Most CT scanners and MRI machines
are not located in the ED, so the patient will need to travel to
When the patient first arrives to the ED they will be taken to an these areas. The nurses and other staff will go with the patient
examination room. All families and friends will be asked to wait to the test and continue to watch the patient closely. These test
in the waiting room. This gives the doctor time to examine the results will tell the neurosurgeon how seriously the patient is
patient. The patient will never be left alone and will be watched injured. They may need to go directly to the operating room.
very closely by the doctors and nurses. The staff will keep family If no operation is needed they will be treated in the ED until a
and friends informed about the patient’s condition. room is available in the Intensive Care Unit (ICU) or floor unit.
2020-2022 BIAK Resource Journal 9
The more critical patient will need to go to the ICU. In the up to a lot of equipment and monitors may look very scary. Just
ICU, they will want to monitor the pressure in the brain; if the remember this is necessary for the doctors and nurses to monitor
pressure in the brain goes up this can cause further damage. To the patient closely and treat problems as they occur. The patient’s
monitor the pressure (called cerebral perfusion pressure), the family and friends will be allowed to see the patient, but because
doctors will place a small tube in the brain. This tube is called an the patient may be so sick, visiting hours may be limited. Each
intra-ventricular catheter or sometimes an intra-cerebral pressure hospital has different rules regarding visiting hours, some allow
(ICP) catheter. The ICP catheter is inserted by drilling a hole one person to visit at a time and some will allow more. There is
in the skull and inserting the tube into the brain. This tube will usually a sign posted in the waiting room of the ICU. In special
allow the doctors and nurses to monitor the pressure inside the circumstances, it may be possible to visit the patient at times other
brain and drain off extra fluid (cerebral spinal fluid) if needed. If than the posted visiting hours. The arrangements can be made
the pressure in the brain remains high, then medications can be with the staff and the patient’s nurse. When visiting the patient
given to help decrease the swelling of the brain. Sometimes, if the keep in mind, they may appear in a deep sleep. If they are on the
swelling can’t be stopped the patient may need to go immediately ventilator they will not be able to talk. The patient may not be
to the operating room. able to open their eyes. This can be very difficult for family and
friends. It is important to
A patient with a severe brain talk to the patient, call
injury will require breathing them by their name and
assistance. They will have tell them who you are.
a tube inserted through Tell them how much you
their mouth or nose into care about them and how
the lungs. This tube is much you love them.
called an endotracheal tube Even if the patient doesn’t
(ETT) and is connected to respond to you, he or she
a breathing machine, called may be able to hear you.
a ventilator. The ventilator Keep that in mind and
will breathe for the patient don’t say anything that
or help the patient to you don’t want them to
breathe. If the patient needs hear or know. It may feel
breathing assistance for a strange talking to the
long period of time then patient when they are not
a tracheostomy may be awake, but the more you
performed. A tracheostomy talk to them, the more
is when a small cut is made comfortable it becomes.
directly above the “Adam’s
Apple” into the windpipe. A tracheostomy tube or “trach” is Most family and friends will want to know when will the patient
inserted in the opening. The tube will then be hooked up to the “wake up” and will the patient be like he or she was before the
ventilator to assist the patients’ breathing. accident. These questions are difficult for the doctors to answer.
Some patients “wake up” and get better. Other patients may remain
Other devices that help monitor the patient’s vital signs and heart in a coma longer and require long term care. Most patients with
function is an arterial line, a central venous catheter and a Swan a severe brain injury will be different than they were before their
Ganz catheter. The arterial line is used to monitor the blood injury. Again, this depends on what part of the brain was injured
pressure at all times. An arterial catheter is placed in an artery, and how severe. Some may think and act differently. Some may
usually in the wrist. The central venous catheter and the Swan have difficulty speaking and remembering. Remember this can
Ganz catheter (usually inserted into the upper chest area) is used be very frustrating for the patient. Usually, a rehabilitation doctor
to monitor the patient’s heart function. The patient will be hooked will evaluate the patient. This can be frustrating and difficult for
up to a monitor that will continuously measure heart rate and the family as well. Sometimes, it helps to talk about what is going
rhythm. A probe will be attached to the patients’ finger to measure on and to share your feeling with others in a similar situation.
the oxygen concentration in the blood. Some hospitals have support group to help families cope through
this difficult time. Talk to the patient’s nurse to see if they can refer
Patients are usually not alert enough to eat in the ICU. If the you to someone who can help.
patient is not alert enough to eat on their own then a feeding tube
will be placed through the nose into the stomach. Liquid nutrition Patients with less severe brain injuries will go to the floor unit.
will be given through this tube. The patient will not be able to get On the floor unit, the patient will have their vital signs and GCS
out of bed to go to the bathroom. A tube called a foley catheter will monitored closely. If the patient ‘s condition changes for the worse
be placed to drain their bladder. When a patient is hooked up to all they will be transferred to the ICU. Patients that have been in the
these things they will have wrist restraints. These restraints will be ICU may be moved to the floor unit when they are more stable
attached to the bed. This is to prevent the patient from pulling out any and are off the breathing machine. How long does a patient stay
of these tubes or their breathing tube. A patient in the ICU hooked in ICU? That depends, some patients only stay a few days and
10 2020-2022 BIAK Resource Journalsome may require weeks or even months. It depends on
the severity of the brain injury and if the patient is having
any complications. This can be very hard and difficult time
for the family and friends. Ask the doctors and nurses
any questions you may have. Write the questions down so
you don’t forget. If you don’t understand what the doctors
or nurses are telling you, ask again. You will want to stay
informed and understand what it happening.
WAIVER CASE MANAGEMENT
When the patient’s condition improves, they will either go
home or to a rehabilitation facility. The rehabilitation facility RiverValley Behavioral Health Waiver Case Managers
re-teaches the patient activities of daily living (ADL’s). Some are highly knowledgeable and understand the
of these activities include, how to feed themselves, how to
dress, how to walk, and talk. The rehabilitation facility will
function of how Case Management contributes to the
prepare the patient and family for the rest of their lives. collaborative process of; assessment, planning,
facilitation and advocacy for services and supports of
Keep in mind; it takes time to arrange for admission into an individual participating in Waiver Services. We
a rehabilitation facility. The doctors, nurses, and social
worker will work on this early in the patients’ hospital
place the interest of the person we are supporting
stay, sometimes while the patient is still in ICU. This may above all else. As Case Managers we work for the
seem early to you but it takes time and they want to be sure individual and facilitate the evidenced-based practice
everything is ready to go when the patient is discharged. of Person-Centered Planning. We respect the rights,
choices, and dignity of all who choose our Case
Management Services.
Michelle P Waiver (MPW)
Supports for Community Living (SCL)
Acquired Brain Injury (ABI)
This article was revised from the “ER to ICU”
article in the BIAK Resource Journal by Don Kautz,
Participant Directed Services (PDS)
CCRN; Linda Hotzclaw, CCRN Angelica Ford, BSN;
Kemberly Shuster, BSN. (270) 689-6500 / (800) 737-0696
www.rvbh.com
Appendix A:
Glasgow Coma Score:
1 2 3 4 5 6
EYES Does not Opens eyes in Opens eyes in Opens eyes N/A N/A
open eyes response to response to voice spontaneously
painful stimuli
VERBAL Makes no Incomprehensible Utters inappropriate Confused; Oriented; converses N/A
sounds sounds words disoriented normally
MOTOR Makes no Extension to Abnormal flexion to Flexion/ Localizes painful Obeys
movements painful stimuli painful stimuli withdrawal to stimuli commands
painful stimuli
The lowest score is a GCS of 3 = deep coma or brain death
The highest score is a GCS of 15 = fully awake person
2020-2022 BIAK Resource Journal 11Helpful
Responses
during
Recovery
Contributed by: Pam Pearson, M.S.S.W., C.C.M.,
Program Manager, Pathways at Louisville East
A brain injury not only affects the person who has
sustained the injury but also affects family, friends
most significant recovery usually occurs within the first
six to twelve months; however, recovery can occur for
and co-workers. When the brain injury first occurs, years after the brain injury.
the family is on an emotional rollercoaster. They are There may be a variety of deficits the person with the
often told the person would not survive and if they do brain injury may exhibit. Physical deficits may include
survive they may not be able to return to a functional tremors in arms/legs, inability to walk or transfer,
lifestyle again. inability to swallow, vision problems and fatigue.
Cognitive or problems with thinking may occur. The
The initial reaction of the family after they have learned person may exhibit such things as short term memory
that a person they love has a brain injury is panic and deficits, distractibility, word finding problems and
fear. During the initial phase of the hospitalization the difficulty performing simple tasks. Behavior issues
family members may be unable to eat or sleep. Shock may occur such as anger, mood swings, verbal/physical
and denial may soon set in as the reality of what is outbursts, chronic irritability, denial of deficits, and
happening begins to manifest. Another emotion that inappropriate behaviors.
may occur is anger, either at the person who had the
injury or the circumstances around the injury. A family
may also be angry at the health care system who they Suggestions for Family Survival
feel may not be providing the type care their loved one Family members and loved ones will need to make sure
should receive. they take care of themselves during the various stages
of recovery. First of all it is important for the loved ones
There may be anger at God for allowing the tragedy to get enough sleep, eat healthy and exercise to stay
to occur. Guilt is another emotion that occurs with healthy. Family and friends should rotate staying at the
the loved one thinking the accident was there fault or hospital, rehab program, or home setting.
that they could have done something to prevent the Second, keep a journal or notebook to be able to share
brain injury from occurring. There may be feelings of the recovery process with others and with the injured
isolation because the family member may feel they are person as they emerge from coma.
going through this alone or that family and friends do Be sure to use the notebook to write down questions
not know how to comfort them. As the person survives you have for the health care providers. Some family
and they begin moving to the rehabilitation stage the members start a web-site or blog which will be
loved ones may begin to hope for a successful recovery. available for everyone and will reduce the family having
After the person survives, the family then begins the to repeat information daily to a variety of persons.
long journey on the road to recovery. Recovery from a Allow other loved ones to assist with this project when
brain injury can last a lifetime. Research has shown the they offer to help.
12 2020-2022 BIAK Resource JournalThird, it is best not to focus on what they should have • Bring pictures and personal items they are familiar
done or could have done, but to accept the brain injury with, read to them and play music they like. Try to
has occurred and use their energy for assistance with change the stimulation every 20 – 30 minutes or so
the recovery. Just talking to someone about the feelings and also allow some quiet time.
of frustration and stress may be beneficial. It may be
beneficial to seek counseling or attend a brain injury • Give the person plenty of time to respond. It may
support group. It may be helpful to have health care take 1-2 minutes to get the response you are seeking.
professionals educate you on what things you can do to
assist in the rehab process. • Do not overstimulate the person as they will need a
great deal of sleep and will be easily fatigued.
Fourth, accept help when someone offers to help do
something for you during this time. They may help with Agitated and Confused Stage
cleaning your house, mowing your lawn, caring for the (Rancho Level 4)
other children, or grocery shopping. During this phase of recovery the person has begun to
become more awake and alert but is not oriented and
Fifth, work with the medical team to identify what to do is very confused about his/her environment. They may
to facilitate recovery. There are various stages the injured become agitated very easily and can use curse words
person goes through and loved ones will need to respond or attempt to hit at people or inanimate objects. They
differently for each stage. may have wide mood swings and are not usually able to
cooperate with the therapy treatment program. These
agitated behaviors commonly occur when someone with
Step by Step, How to Help the Person a brain injury enters this phase.
with the Brain Injury
When someone has survived a brain injury they can go • Anticipate that the person will have a very short
through various stages of recovery. There are times when memory for information, possibly lasting only a few
the person may stop at one of the levels indefinitely. seconds.
Family involvement is very important in the recovery • It is best to try to redirect the person when they
process. During the various stages, there are different focus on negative thoughts or behaviors rather than
approaches the family should take in dealing with their trying to scold them.
family member. • You should try to redirect them and remove any
Unresponsive or Minimally Responsive stimuli that may be contributing to the negative
(Rancho Levels 1-3) behavior.
During this phase of recovery, the person with a brain • Do not overwhelm with information or visitors.
injury may not respond or the responses may be general Keep visitors to 1-2 people at a time.
most of the time. There may be some localized responses
• The person will not be able to learn new information
to sound and physical discomfort. Any responses are
inconsistent. Responses should be as follows: at this time so do not expect them to remember
information such as what they did during therapy or
• Speak to the person using a calm and comforting
what they had for lunch.
tone of voice. You should assume the person may
be able to understand what you say, therefore be • Do not say “You are wrong” but provide them
cautious not to speak negatively about them in their withcorrect information.
presence. • Do not show anger or frustration towards the person.
• Talk to the person about people they know and Please do not take the behavior personally. You
recent current events. may need to rely on the facility staff to have more
• Limit the number of visitors to 1-2. Be sure there interaction during this time than you are able to have
is not too much stimulation. One person at a time with the patient.
should speak to the person with the brain injury.
2020-2022 BIAK Resource Journal 13Confused, Inappropriate but not Agitated (Rancho Level 5)
During this phase of recovery, the person is alert but still confused however, the agitation has subsided some. The
person is usually not oriented to person place, or time. There may be times when they can begin to sustain their
attention. They are still unable to learn new behavior. They may confabulate (state information that is not true) or
become inappropriate with their language at times.
• Give one step simple instructions.
• Do not encourage inappropriate behavior or language.
• Do not use phrases with a double meaning or sarcastic humor: try to use language that is simple and direct.
• Try to keep a consistent and routine schedule.
• Gently orient the patient to the present.
Higher Level Responses
(Rancho Level 6-8)
During these phases the patient will show What can I do to stay
remarkable recovery. The patient will
begin to make new memories and attend in my home?
to the environment. They will start having
more goal directed behaviors but will still Aging safely in your home is possible.
require some assistance to complete tasks.
They may begin to work with Vocational
Rehabilitation or return to a work setting. Stay in your home. Be independent.
• The person may still make some poor Living an independent lifestyle is every adult’s right.
decisions due to their inability to Adapting your home to your lifestyle will allow you to
recognize their deficits so help provide stay safely in your home for as long as you wish, while
a safe environment. Speak calmly when
having peace of mind. Remain independent and
providing information and praise them
comfortable in your Life Management Home.
for safe and appropriate decisions.
Your home can now be fully accessible to you and Phil Fackler, Owner of Fackler Homes
• Encourage the person to use memory be ready for a caregiver for down the road.
aides, such as lists, alarms, and
Transitioning a loved one
•
calendars.
It is important for the person to get
Designed Around Your Life “ from their home or from a
enough sleep. A person with a brain Ramps
injury fatigues easily and this will Elevators medical facility is often life
make it harder for them to process Stair lifts
Transfer chairs changing ... not just for the
information.
Handicap kitchens patient but for the family with
• Encourage independence, allowing the First floor laundry
person to take more responsibilities and Modified halls & doorways
make decisions. Barrier free bathrooms & showers
Wheelchair accessible closets
whom they are going to live.
”
• Do not expect the person to be back to Custom handicap features
normal. It is rare that a person who has
Caregiver quarters
suffered a brain injury returns to the
exact level of functioning they were at
before the injury.
Please contact us for a personal consultation.
When a person suffers a brain injury life Phil Fackler 502.648.2650
changes for both the caregivers and the Collin Fackler 502.548.0750
Certified Aging-in-Place Builder
person with the injury. Both parties need facklerhomes.com
support and encouragement to continue 8013 Lakeside Quarry Drive National Association of Home Builders
Certified
down the path of recovery. Louisville, KY 40245
Aging-in-Place
Specialist
14 2020-2022 BIAK Resource JournalGetting Ready
to Come Home
Contributed by: Martha Hawkins BSN, RN, CRRN;
Case Manager, Frazier Rehabilitation Hospital
Eddie Reynolds M.Div. Outreach Coordinator,
Brain Injury Alliance of Kentucky
B elieve it or not, the time will come when you will be told the
news that you’ve wanted to hear for some time: that your family
• If specialized equipment is needed, then the rehabilitation
facility will usually have staff on hand to help you access
the resources and services that will be needed in the home.
member will be discharged and soon will return home. However, A good task for someone who wants to help would be to
you will then learn that hospitalization and rehabilitation is only get the house or apartment physically ready for your family
the start of the long process of recovery. After a person has been member’s return home. Be sure to inquire about resources
judged to be medically stable and has received all the therapy if physical changes such as an access ramp will be needed
that the rehabilitation team has required; the family will need to before you return home.
prepare to take their family member home. Now that the day is
here that you’ve longed for since that call from the hospital came • Be aware that it is common for persons with brain injury
has finally arrived and now you may be asking, “What’s next?” to have a lot of fatigue for some time after their injury.
Therefore, be careful about planning too many homecoming
It would be a mistake to assume that when your family member parties and surrounding the person with visitors. Be sure to
is discharged that there is nothing more to do. Physical, speech talk to the person with the injury, to know when they feel
and occupational therapy is designed to teach the person the like visitors and whom they would like to see. You may wish
skills that they will need to continue their recovery from brain to schedule visitation times so family and friends will know
injury. Many professionals will tell you that recovery is a life-long when it is best to stop for a visit. Remind visitors not to be
process and does not end when your family member is no longer offended if they are asked to cut their visit short; but that the
sent to therapy. Here are some suggestions that we hope make person tires easily and may need some rest.
the transition home easier for everyone and will aid in improved
recovery. • Treat the person with the injury normally and be ready
to make reasonable accommodations. For example, if a
• Use the time in rehabilitation to learn what you can about person has a broken leg, crutches and avoiding stairs is an
brain injury and how to help your family member. That is why accommodation; carrying them up the stairs is not. Make
many rehabilitation facilities have family education classes; sure that while barriers are removed, the person with the
they are preparing you as well as your family member for injury is treated just like any person their age. It is important
the day when they will return home. Regardless of the level for their continued rehabilitation that they receive the
of support your family member needs, you will need to be supervision and support necessary for them to be fully
educated in brain injury and recovery in order to educate independent again.
family and friends. Keeping a notebook with papers and notes
from what you have learned will be invaluable to you when • Be patient. Be patient with the both family and friends. While
you all return home. You will need to be prepared to educate the person with the brain injury may look normal, they may
family and friends on what to expect and even offer a few act differently. This may be difficult for everyone and family
practical suggestions on how they can assist in recovery. and friends need to know that any changes of behavior are a
part of the injury. Family therapy may be needed to help the
• Identify your resources for help before the discharge date family, especially children, to adjust to these changes.
arrives. The Brain Injury Alliance of Kentucky and the
Traumatic Brain Injury Trust Fund will be able to help you • Get organized. Organization will be the key to helping your
in this process. You may need to contact your local Social family member adjust. Organization is a key to dealing with
Security Office and apply for any of their financial services memory problems. Teach the person to put things in the
that your family member will need and will be qualified to same place all the time, use calendars, timers and other tools
receive. to remember medications and appointments. Maintain a
regular schedule of sleep and eating to help them continue
their recovery.
2020-2022 BIAK Resource Journal 15Getting Along with Your Doctor
Follow up visits to neurologists and even your family physician • Be brief in the description of problems. Use simple sentences
will be a part of your routine for some time ahead. A few and be as direct in the description as possible.
precautions taken before discharge may prove very helpful.
Speak with the staff at the rehabilitation facility about getting • If necessary, keep a pain journal. Most hospitals have a pain
your family member’s medical records transferred to your family scale to help you communicate your level of pain. You may
physician. They will need to know what medications the person want to put down how you feel when you first wake up, after
is taking and what treatment they have received. This may medications and meals. Chart your pain scale each day. The
save your family member from unnecessary tests and delays in changes will let you know if you really are getting better, or
treatment. worse.
Be sure to make all appointments, or call in advance if • Inform the doctor on any progress you are making. The fact
you can’t make the appointment and request to reschedule. This that you are getting better in some areas is a compliment to
will show your involvement and responsibility in this area. This the doctor.
will be an important habit to form in other areas as well. Be sure
to use a calendar that is well posted and use reminders to keep
those appointments. Don’t trust it to memory: write it down! By working together with family, friends and professionals you
can be assured that your family member’s journey to recovery
Other suggestions include: will continue long after they return home. The Brain Injury
• Bring a complete list of your physical problems. Take time to Alliance of Kentucky will continue to provide you with any
write down all of your physical symptoms. information and resources you need to aid you and your family
in the rehabilitation
• Take your medications as prescribed. However, if you have process.
any side-effects, call the doctor’s office IMMEDIATELY! It
may be simple or severe; but be sure to let your doctor know.
Do not stop taking your medication without first calling
your doctor.
Pathways Brain Injury.pdf 1 2/12/2016 11:03:08 AM
• CARF accredited specialty
brain injury program
• Comprehensive treatment
at Louisville East by an interdisciplinary
team
The Pathways Brain Injury
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• Licensed physical,
M Program is an inpatient rehabil- occupational and speech
Y itation unit that offers therapy33 hours
therapy hoursaaday,
day,55days
daysaaweek
week
CM sub-acute and neurobehavioral
MY services for person with • Physiatrist
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acquired brain injuries. Path-
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ways is designed to provide • Recreation therapy service
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nursing and rehabilitation
services for those with trau- • Rehabilitation nursing
4200 Browns Lane
matic and non-traumatic brain • Neuropsychology Louisville, KY 40220
injuries. Pathways accepts 502.459.8900
commercial insurance as well • Social services www.pathwaysbraininjuryprogram.com
www.providencelouisville.com
as Medicare and Kentucky
Medicaid. • Psychiatry
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