Brain Injury Alliance of Kentucky - An Informational and Educational Guide on the Issues of Acquired Brain Injuries

 
Brain Injury Alliance of Kentucky - An Informational and Educational Guide on the Issues of Acquired Brain Injuries
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
Brain Injury Alliance of Kentucky - An Informational and Educational Guide on the Issues of Acquired Brain Injuries
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
Brain Injury Alliance of Kentucky - An Informational and Educational Guide on the Issues of Acquired Brain Injuries
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
Brain Injury Alliance of Kentucky - An Informational and Educational Guide on the Issues of Acquired Brain Injuries
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                     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.

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                     859.254.5701 • 800.233.3260             Elizabethtown, KY 42701
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                     encompasshealth.com

    Brain Injury rehabilitation –
    Life-changing results
                                                                      ©2019:Encompass Health Corporation:1522245P

4                                                            2020-2022 BIAK Resource Journal
Brain Injury Alliance of Kentucky - An Informational and Educational Guide on the Issues of Acquired Brain Injuries
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

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Brain Injury Alliance of Kentucky - An Informational and Educational Guide on the Issues of Acquired Brain Injuries
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.

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Brain Injury Alliance of Kentucky - An Informational and Educational Guide on the Issues of Acquired Brain Injuries
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
Brain Injury Alliance of Kentucky - An Informational and Educational Guide on the Issues of Acquired Brain Injuries
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.

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Brain Injury Alliance of Kentucky - An Informational and Educational Guide on the Issues of Acquired Brain Injuries
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
Brain Injury Alliance of Kentucky - An Informational and Educational Guide on the Issues of Acquired Brain Injuries
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 Journal
some 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                                                                                                 11
Helpful
                                                                     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 Journal
Third, 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                                                                                    13
Confused, 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 Journal
Getting 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                                                                                                             15
Getting 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
 C
                                                                    • 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
CY
           acquired brain injuries. Path-
CMY
           ways is designed to provide                              • Recreation therapy service
 K
           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

      16                                                                                                             2020-2022 BIAK Resource Journal
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