Brain Injury Basics for Families in NJ (PowerPoint)

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Brain Injury Basics
for Families
No Brain Injury is Too
Mild to Ignore,
Or Too Severe to
Lose Hope
What is brain injury?
Brain injury is often defined as either a
Traumatic Brain Injury (TBI)
OR
Acquired Brain Injury (ABI)
Family Helpline: 1-800-669-4323
Traumatic Brain Injury
Traumatic Brain Injury (TBI) is an insult to the brain
caused by an external force that may produce a
diminished or altered state of consciousness.
Causes of TBI can include motor vehicle crashes, falls,
sports injuries, assaults, blast injuries.
Family Helpline: 1-800-669-4323
Acquired Brain Injury
Acquired Brain Injury (ABI) is an injury to the
brain which is not hereditary, congenital or
degenerative and has occurred after birth.
Causes of ABI include anoxia, aneurysms,
infections to the brain, stroke, brain tumors.
Family Helpline: 1-800-669-4323
“The Silent Epidemic”
It is estimated that
5.3 million Americans
live with a disability as a result of brain
injury.
Family Helpline: 1-800-669-4323
TBI in the
United States
50,000
Deaths
Average annual
numbers, 1995-2000
235,000
Hospitalizations
1,111,000
Emergency Department Visits
?? Receiving Other Medical Care or No Care ??
From the 2004 CDC Report: TBI in the United Sates: ED Visits, Hospitalizations and Deaths
Family Helpline: 1-800-669-4323
Traumatic Brain Injury
in New Jersey
 Approximately
8,000 adults and children
each year are hospitalized or die as a
result of a traumatic brain injury.
than 20,000 people are treated
each year in doctor offices or emergency
rooms for TBI.*
 More
* Conservatively extrapolated from national data
Family Helpline: 1-800-669-4323
Traumatic & Acquired Brain
Injury in New Jersey
Although the cause of injury differs, many
programs and services for people with brain
injury serve both TBI & ABI.
For example, the TBI Medicaid Waiver & TBI Fund
both serve individuals with TBI & ABI.
Family Helpline: 1-800-669-4323
Changes Over the Years
30 years ago –
50% of persons with a
brain injury died as
a result of the injury.
Today –
22% die as a result
of injury.
Family Helpline: 1-800-669-4323
Functions of the Brain
The best way to
understand the
affect
of injury to the brain
is to understand the
function of each
area
of the brain and
related systems
and
structures.
Family Helpline: 1-800-669-4323
Brain Stem
The brain stem,
located at the base of the skull,
is responsible for life-sustaining functions such as
regulation of blood pressure, heart rate, breathing
and body temperature.
Damage to the brain stem could result in an altered
state of consciousness, such as coma.
Family Helpline: 1-800-669-4323
Cerebellum
The cerebellum,
located behind the brain stem,
is responsible for muscle coordination and
balance.
Family Helpline: 1-800-669-4323
Occipital Lobe
The occipital lobes,
located at the back of your brain,
is the visual processing center in the brain.
Damage to these areas may result in neurological
visual impairment.
Family Helpline: 1-800-669-4323
Temporal Lobes
The temporal lobes
lie at the sides of the brain and are the
auditory (hearing) processing system of
the brain.
Family Helpline: 1-800-669-4323
Parietal Lobes
The parietal lobes,
located above your occipital lobes,
controls the way your brain responds to
information it receives, including visual, auditory
and physical information.
For example,
being touched, loud noises, bright lights.
Family Helpline: 1-800-669-4323
Frontal Lobes
The frontal lobes,
located in the front of your brain,
control the processes of
planning, organization, problem solving,
reasoning, emotions and motor skills.
Family Helpline: 1-800-669-4323
Severity of Injury
Sometimes, a brain injury is categorized in
one of the following three ways:
 Mild Brain Injury
 Moderate Brain Injury
 Severe Brain Injury.
Family Helpline: 1-800-669-4323
Mild Brain Injury
Not Just A Bump On The Head!

Loss of consciousness does not have to occur—
the person may be dazed or confused
 If loss of consciousness occurs, it is very brief,
usually a few seconds or minutes
 A concussion is considered a mild brain injury
 Testing or scans of the brain may appear normal
Family Helpline: 1-800-669-4323
Moderate Brain Injury

A loss of consciousness lasts from a few
minutes to a few hours
 Confusion lasts from days to weeks
 Physical, cognitive, and/or behavioral
impairments last for months or are permanent.
Family Helpline: 1-800-669-4323
Severe Brain Injury

Severe brain injury occurs when a prolonged
unconscious state or coma lasts days, weeks, or
months.
 Persons who sustain a severe brain injury can
make significant improvements, but are often left
with permanent physical, cognitive, or behavioral
impairments.
Family Helpline: 1-800-669-4323
Severity of Injury
Severity of injury does not guarantee outcome.
Persons who sustain a mild brain injury may have
ongoing difficulties for years to come and
persons with a severe brain injury may make
marked improvements over time.
Every brain injury is unique.
Family Helpline: 1-800-669-4323
Brain Injury & Families
Just as each brain injury is unique, brain injury will
affect each family differently.
Brain injury often changes the roles and
responsibilities of family members. The change
can be so drastic it can be similar to bringing a
stranger home from the hospital with you.
Family Helpline: 1-800-669-4323
Parental Relationships
Parents of children, adolescents, and adults
with brain injury may become lifelong
caregivers of their sons and daughters.
Family Helpline: 1-800-669-4323
Sibling Relationships
Siblings live with the consequences of having a
sibling with a disability.
They may receive less attention from parents and
may take on a lifelong responsibility of worrying
and caregiving.
Family Helpline: 1-800-669-4323
Spousal Relationships
A spouse’s relationship may shift mildly or
drastically from one of partner to one of
caregiver.
Family Helpline: 1-800-669-4323
Child-Parent Relationships
The child of a parent with a brain injury may
experience a role reversal.
They may end up caring for their parent early in
their lives, and receive less attention from the
parent providing caregiving.
Family Helpline: 1-800-669-4323
Grief & Loss
for the Individual
Potential loss of identity, self-esteem, self-control,
expression/communication, independence,
relationships, mobility, vocational/career identity,
productivity, income and assets.
Family Helpline: 1-800-669-4323
Grief & Loss
for the Family
Potential change in relationships, dreams for
loved one, responsibilities as caregiver,
personal freedom, lifestyle, income and
assets.
Family Helpline: 1-800-669-4323
Stages of Grief
There are several stages of grief that are
common following a brain injury that both
people with brain injury and family
members go through.
Family Helpline: 1-800-669-4323
Stages of Grief
 Denial
 Anger
 Bargaining
 Depression
 Acceptance
Family Helpline: 1-800-669-4323
Denial
After a terrible experience, a person may act
as if it did not happen.
“This could not have happened to me.”
“She’ll be her old self again soon.”
Family Helpline: 1-800-669-4323
Anger
Once the person accepts that the event
occurred, anger and frustration are the
next emotions.
The anger can be directed at doctors, family,
friends, God, and even at self.
“The doctor doesn’t know anything.”
“No one is helpful.”
Family Helpline: 1-800-669-4323
Bargaining
Trying to make deals.
“I’ll be a perfect person if my son is able to
be normal again.”
“I will never do ____ again if you let me
return to my old self.”
Family Helpline: 1-800-669-4323
Depression
This is a very difficult and painful stage of
recovery for both people with brain injury
and family members.
“What’s the use? Nothing will ever be the
same again.”
“Why bother with rehab?”
Family Helpline: 1-800-669-4323
Acceptance
As time passes, individuals and families can
come to accept the changes that have
taken place.
Nothing can make life as it was before, but
life can be new and worthwhile.
Family Helpline: 1-800-669-4323
Living With Brain Injury
Brain injury will affect each individual differently,
but there are many common consequences.
The following consequences and strategies are
offered to help both you and your loved one
cope with brain injury.
Family Helpline: 1-800-669-4323
Cognitive Consequences
Difficulty with...
 Memory
 Persistence
 Decision making
 Organization
 Planning
 Self-perception
 Attention








Thinking
Problem solving
Sequencing
Perception
Judgment
Inflexibility
Processing speed
Concentration
Family Helpline: 1-800-669-4323
Physical Consequences

Seizures
 Muscle spasticity
 Fatigue
 Headaches
 Balance problems
 Speech difficulties


Visual difficulties
Hemiparesis (paralysis)
Family Helpline: 1-800-669-4323
Emotional/Behavioral
Consequences

Anxiety
 Depression
 Mood swings
 Impulsivity
 Irritability
 Social withdrawal
 Aggression

Lack of motivation
 Egocentric behaviors
 Lack of self-awareness
 Inappropriate behavior
and/or language
 Sexual dysfunction
 Feelings of loneliness
Family Helpline: 1-800-669-4323
Strategies for
Living with Brain Injury
One of the most important things family
members can do is establish structure,
consistency, and repetition in their family
members routine.
Family Helpline: 1-800-669-4323
Structure, Consistency &
Repetition

Establish a schedule.
 Keep your family member’s environment
organized.
 Utilize calendars, notebooks, wall charts, and
visual aids as reminders, but be careful not to
overstimulate with too much information.
Family Helpline: 1-800-669-4323
Structure, Consistency &
Repetition

Remain consistent in what you do and what your
expectations are (for example, always remaining
a model of calm behavior during outbursts)
 Repetition will provide a feeling of safety, and be
the key to new learning for your family member.
Family Helpline: 1-800-669-4323
Breaking Down Tasks
It is always best to break tasks into steps, whether
it be completing paperwork for Social Security
Disability or preparing a meal.
Expecting large projects to be completed all at
once will be setting your family member and
yourself up for failure.
Family Helpline: 1-800-669-4323
Minimizing Distractions
Providing as much of a distraction free
environment as possible will minimize
overstimulation and cognitive overload.
Family Helpline: 1-800-669-4323
Anticipating Stressful Events
Anticipate situations that may be stressful for your
family members, and try to avoid or minimize the
stress.
For example, large family gatherings could be
overwhelming and trips to the store when they
are crowded and noisy could be cognitively
overwhelming.
Family Helpline: 1-800-669-4323
Watch for Depression
Signs of depression to watch for include:
 Changes in eating habits
 Changes in sleeping habits
 Remarks about the futility of life
 Dwelling on the past
 Excessive time spent in non-active ways
like watching too much television
Family Helpline: 1-800-669-4323
Behavioral Challenges
An estimated 90% of all people who are severely
disabled by a brain injury may experience some
related emotional, behavioral or psychiatric
problems.
40% of these individuals still have behavioral
issues 5 years after the injury.*
*Brain Injury Association of America
Family Helpline: 1-800-669-4323
Behavioral Challenges
Individuals with milder brain injuries can also
experience behavioral challenges, including
mood changes, irritability and fatigue, which
might be more difficult to identify as being
related to the brain injury.
Family Helpline: 1-800-669-4323
Behavioral Challenges
Behavioral challenges can range from mild
personality changes to persistent difficulty
controlling emotions, lack of inhibition,
managing one’s behavior, and even violent
outbursts.
Family Helpline: 1-800-669-4323
Behavioral Challenges
Behavioral problems can cause:

Marital discord
 Problems with social relationships
 Family difficulties
 School or workplace problems
And should never be ignored
Family Helpline: 1-800-669-4323
Behavioral Challenges
There are professionals who can assist with
behavioral problems, including:

Neuropsychologists: expertise in assessing
the relationships between the brain, behavior
and cognition

Neuropsychiatrists: can prescribe medications
that affect mood, thinking and behavior
Family Helpline: 1-800-669-4323
Behavioral Challenges:
Tips for Families

Identify stress relievers (taking deep breaths,
removing the person from the aggravating
environment)
 Learn to recognize when behaviors will occur
(when someone is tired, ill, overwhelmed)
Family Helpline: 1-800-669-4323
Behavioral Challenges:
Tips for Families

Identify specific triggers or events (changes in
routine, dealing with difficult tasks or people)
 Identify triggers that your family member is
becoming upset (facial expressions, body
language)
Family Helpline: 1-800-669-4323
Behavioral Challenges:
Tips for Families
Identify a plan for when behaviors happen –
having a plan will help to ease your stress, as
well as your family member’s stress
 Know when to seek the help of a professional –
you don’t have to do it all yourself

Family Helpline: 1-800-669-4323
Behavioral Challenges:
Things to Remember

Remain involved in activities to avoid social
isolation
 Allow for independence
 Coach, encourage and reinforce positive
behavior
 Understand the person may be doing their best
to control the behavior
Family Helpline: 1-800-669-4323
Support Systems
Develop a support system for your family member,
and avoid social isolation.
This could include family, friends, support groups,
a mentor, a local church group, social and
recreational groups in the community, your local
Independent Living Center.
Family Helpline: 1-800-669-4323
Getting Involved
Daily activities like returning to work,
volunteering, taking a class, and
participating in community activities will
not only provide a structured routine, but
will also increase your family member’s
self-esteem and avoid social isolation.
Family Helpline: 1-800-669-4323
Independence
“Family members or caregivers should let
the recovering TBI survivor burn dinner
every night if necessary but step in if the
house is burning down.” – Claudia Osborn
Be cautious that caregiving allows for the
opportunity to be independent and make
mistakes.
Family Helpline: 1-800-669-4323
Things to Remember
Every individual is different, and every
injury is unique.
Get to know your family member’s abilities, not
just their limitations.
 Listen to your family member.
 Treat them in an age appropriate manner.

Family Helpline: 1-800-669-4323
Things to Remember
Everyone needs to have control over
their own life.
Without such control, dissatisfaction,
frustration, resentment and depression are
likely to occur.
Family Helpline: 1-800-669-4323
Tips for Caregivers
Take care of yourself, you will need to sleep
and eat to maintain your strength and wellbeing.
Family Helpline: 1-800-669-4323
Tips for Caregivers
Delegate responsibilities like household
chores, staying with your loved one,
running errands.
Friends and family often want to help, but
don’t know what to do.
Family Helpline: 1-800-669-4323
Emotional Support
Make sure you have someone to express your
emotions to, accompany you to appointments,
have fun with.
You do not always have to be strong and you can
accept help. Utilize friends, family, advocates to
support you and your loved one.
Family Helpline: 1-800-669-4323
Become an Advocate
Learn about brain injury, question the rehabilitation
team, be involved, obtain articles, books, and
videos to help you learn.
You will often have to educate those around you
about brain injury. Being an advocate and
asking for help will ease this burden.
Family Helpline: 1-800-669-4323
Brain Injury Association
of New Jersey
Founded in 1981 by family members and
friends of persons with brain injury, the Brain
Injury Association of New Jersey is a
statewide membership organization
dedicated to providing education, outreach,
prevention, advocacy and support services to
all persons affected by brain injury and to the
general public.
Family Helpline: 1-800-669-4323
BIANJ Programs & Resources
Information & Resources Helpline
1-800-669-4323
732-738-1002
[email protected]
Family Helpline: 1-800-669-4323
BIANJ Programs & Resources
Brain Injury Resource Center
 Free Publications
 Articles on brain injury and disability
related topics
 Browse & Borrow Book & Video Library
Family Helpline: 1-800-669-4323
BIANJ Programs & Resources
Support Groups
16 affiliated groups throughout the state for
people with brain injury and their families
Family Helpline: 1-800-669-4323
BIANJ Programs & Resources
Mentoring
Matching trained mentors with people with
brain injury and family members in need of
support
Family Helpline: 1-800-669-4323
BIANJ Programs & Resources
Family Support
For eligible individuals, injured before the
age of 22 and registered with the Division
of Developmental Disabilities, care
coordination services to assist them and
their families in finding and obtaining the
supports and services they need.
Family Helpline: 1-800-669-4323
BIANJ Programs & Resources
TREK
Together in Recreation, Exploration &
Knowledge
A week of summer respite for individuals 16
and older at Camp Ockanickon in
Burlington County.
Family Helpline: 1-800-669-4323
BIANJ Programs & Resources
Annual Seminar
A two-day seminar providing people with brain
injury, their families, and the professionals
working with them education about new brain
injury issues and topics, and an opportunity to
meet with one another.
Family Helpline: 1-800-669-4323
BIANJ Programs & Resources
Regional Trainings
Every spring, the Association holds full-day
regional trainings on brain injury for health &
human service workers in the northern, central &
southern regions of the state.
Families are encouraged to let the health & human
service workers that assist them know about this
unique opportunity to learn about brain injury.
Family Helpline: 1-800-669-4323
BIANJ Programs & Resources
Membership
In becoming a member of the Association,
families will be kept apprised of important
events and issues related to brain injury
through our quarterly newsletter, Annual
Meeting, and BIANJ event mailings.
Family Helpline: 1-800-669-4323
BIANJ Programs & Resources
Staying in Touch
 E-News: The Association’s monthly
electronic newsletter.
 Leg-Net: The Association’s e-mail network
to learn about important legislative issues.
 Website: Updated regularly with important
news & events.
Family Helpline: 1-800-669-4323
BIANJ Programs & Resources
The Association also works to raise
awareness of brain injury and its
preventability through a number of
additional programs and initiatives.
Family Helpline: 1-800-669-4323
Additional Resources
The following are just a few of the resources
available.
For further information & resources, contact
an Information & Resources Specialist at
the Association’s Helpline at
1-800-669-4323.
Family Helpline: 1-800-669-4323
Additional Resources
Traumatic Brain Injury Specialized Care Units
New Jersey Medicaid has authorized some long
term care facilities to provide specialized care to
certain nursing home residents with exceptional
needs, including brain injury.
Pre Admission Screening by Medicaid is required
for these programs.
Medicaid: 1-800-356-1561
Family Helpline: 1-800-669-4323
Additional Resources
Division of Disability Services (DDS)
This state office provides information and referral
services to people with disabilities and their
families, who are seeking help locating appropriate
resources in their communities.
The Division also is responsible for overseeing various
Medicaid home-and community-based waiver programs
that are designed to help people with disabilities live as
independently as possible.
1-888-285-3036
Family Helpline: 1-800-669-4323
Additional Resources
Traumatic Brain Injury (TBI) Fund
As a payer of last resort, providing
individuals with the supports and services
they need.
Administered through the Division of Disability
Services.
1-888-285-3036
Family Helpline: 1-800-669-4323
Additional Resources
Traumatic Brain Injury (TBI)
Medicaid Waiver
Developed as an alternative to nursing homes for
people with brain injury ages 22-65, with an injury
occurring after an individual’s 21st birthday.
Administered through the Division of Disability
Services.
1-888-285-3036
Family Helpline: 1-800-669-4323
Additional Resources
Division of Developmental Disabilities (DDD)
For individuals whose disability manifested before
age 22 and resulted in lifelong conditions that
affect a person’s ability to live independently, this
state agency arranges and coordinates services
to eligible state residents.
(609)-292-3742
Family Helpline: 1-800-669-4323
Additional Resources
Additional Medicaid Waivers exist to assist people
with disabilities, including:

Community Resources for People with Disabilities
(CRPD) Waiver
 Community Care Waiver (CCW)
 Medicaid Waiver for the Elderly & Disabled to Provide
Enhanced Community Options (ECO) Waiver
 Community Care Program for the Elderly & Disabled
(CCPED) Waiver
Family Helpline: 1-800-669-4323
Additional Resources
Division of Vocational Rehabilitation
Services (DVRS)
Provides services to individuals of employable age
with disabilities through 18 district offices.
(609)-292-2000
Family Helpline: 1-800-669-4323
Additional Resources
Social Security Disability Insurance (SSDI)
Benefits for individuals who have enough Social Security credits and
who have a severe physical or mental impairment.
AND
Supplemental Security Income (SSI)
A Federal program established for the aged and people
with disabilities who have a low income and few assets.
1-800-772-1213
Family Helpline: 1-800-669-4323
Additional Resources
Board of Social Services
County offices that provide services
including food stamps, general assistance,
emergency assistance, Medicaid, and
support services to people with disabilities.
Family Helpline: 1-800-669-4323
Additional Resources
Independent Living Centers
Community-based, consumer driven organizations
for people with disabilities.
Family Helpline: 1-800-669-4323
Additional Resources
County Offices for the Disabled
A clearinghouse for information about
programs and services for people with
disabilities at a local level.
Family Helpline: 1-800-669-4323
Additional Resources
2-1-1
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
An easy-to-remember telephone number that connects
callers to the health and human services, community
resources and government assistance they need.
Available 24/7.
Easily accessed by any landline or cell phone.
Calls are free and confidential.
Multi-lingual/TTY/TTD.
Certified Call Specialists make appropriate referrals and
monitor outcomes to ensure services are provided.
Family Helpline: 1-800-669-4323
Brain Injury
Association
of New Jersey, Inc.
1-800-669-4323
(732)-738-1002
www.bianj.org
[email protected]
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