Transcript BRAIN INJURY IN PENNSYLVANIA - abin

MAXIMIZING RECOVERY
AFTER BRAIN INJURY
© 2008 Barbara A. Dively
CDC Statistics
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9,900,000 disabled by stroke and trauma
7,300,000 with intellectual disabilities
5,400,000 disabled by mental illness
190,000 paralyzed by spinal cord injury
$60,000,000,000 annual TBI costs
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In Pennsylvania
7,800 hospitalized and 41,000 emergency room
visits each year for traumatic brain injury.
Of children under age 21 in 2004, 32,179 had a
prior hospital stay and 180,202 had an
emergency room visit for traumatic brain injury.
458,000 Pennsylvanians live with a disability
caused by stroke or traumatic brain injury.
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Changes Over the Years
30 years ago –
50% of those with a
TBI died as a result
of the injury.
Today –
22% die as a result
of TBI.
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Public Systems Lack
Screening & Rehabilitation
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Medical Access
Early Learning
Children, Youth and Families
Special Education
Developmental Programs
Behavioral Health
Substance Abuse in OMHSAS and BDAP
Juvenile Justice
Mental Health Courts, parole, probation
County jails and state prisons
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Special Populations
• Mt. Sinai Brain Injury Screening
Questionnaire - 20% of LD children and
30% of SED in Chicago Special Education
were actually brain injured.
[email protected].
• Ken Carlson, Minnesota Department of
Corrections, 85% of male inmates with
one or more brain injuries. 651-361-7286.
• U.S. Army – 1 in 5 returning soldiers
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Functions of the Brain
The best way to
understand the
effects of an
injury to the brain
is to understand the
function of each
area of the brain
and related
systems and
structures.
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The Brain has Two Hemispheres
• The brain is like two halves of an apple
• Each right and left hemisphere has :
– a frontal lobe behind the forehead
– a parietal lobe near the top of the head
– a temporal lobe above the ear
– an occipital lobe at the back of the head
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The Lobes of the Brain
• Frontal - planning, organization, problem
solving, reasoning, emotions
• Parietal - response to incoming
information
• Temporal - attach meaning to sounds
• Occipital - attach meaning to sights
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Brain Stem
• Located at the base of the skull.
• Regulates life-sustaining functions such as
blood pressure, heart rate, breathing and
body temperature.
• Damage can result in altered
consciousness, such as coma.
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Cerebellum
• Located at the back of the head between
the skull and brain stem.
• Responsible for muscle coordination and
balance.
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Acquired Brain Injury
• an injury to the brain,
• occurring after birth,
• causing cognitive, behavioral or physical
changes,
• not inherited, congenital, or degenerative.
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Non-Traumatic Causes
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Chemotherapy
Stroke
Cardiac arrest
Heart attack
AVM
Aneurysm
Near suffocation
Near drowning
High fever
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Lightening
Near electrocution
Epileptic seizures
Infection
Anesthesia
Brain tumor
Brain/cardiac surgery
Poisoning
Drugs, alcohol
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Traumatic Brain Injury
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an injury to the brain,
occurring after birth,
due to an external force,
causing cognitive, behavioral or
physical changes,
• not inherited, congenital, or
degenerative.
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Examples of Trauma
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Shaken baby
Blast and explosions
Playground falls
Bicycle accidents
Skate/snow boarding
Skiing, water skiing
Motorcycle
All terrain vehicles
Surfing
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Motor vehicle crashes
Slip and fall
Stair falls
Team sports
Boxing
Assault, abuse
Gunshot
Falling object
Rollar skating
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Mild Traumatic Brain Injury
• If loss of consciousness occurs, it is very brief,
usually a few seconds or minutes.
• The survivor may be dazed or confused.
• Permanent physical, cognitive, and/or behavioral
impairments may or may not occur.
• Testing or brain scans may appear normal.
• A concussion is considered a mild brain injury.
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Moderate Traumatic Brain Injury
• Loss of consciousness may last from a few
minutes to a few hours or a day or so.
• Confusion may last days, weeks or longer.
• Permanent physical, cognitive, and/or behavioral
impairments may or may not occur.
• Testing or brain scans may appear normal.
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Severe Traumatic Brain Injury
• A prolonged unconscious state or coma lasts
days, weeks, or months.
• Survivors can make significant improvements,
but are often left with permanent physical,
cognitive, or behavioral impairments.
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Severity vs. Outcome
• Severity does not predict the outcome.
• Mild traumatic brain injury may cause
difficulties for years to come.
• Severe traumatic brain injury may improve
significantly over time.
Every brain injury is unique.
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Neurons Must Network
• Brain injury is an injury to neurons (brain
cells) causing a period of confusion,
amnesia or loss of consciousness that is
followed by physical, cognitive and/or
behavioral changes.
• 10,000 million neurons are arranged in
networks that control every life function.
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Common Physical Outcomes
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Seizures of all types
Muscular spasticity, paralysis
Double vision, low vision, blindness
Loss of smell, loss of taste
Slurred speech
Headache or migraine
Fatigue, need for more sleep
Balance problems, gait problems
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Common Cognitive Outcomes
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Memory formation & loss
Process & react slowly
Unable to concentrate
Conversation difficult
Word finding difficult
Spatially disorganized
Thoughts disorganized
Judgment impaired
Only one thing at a time
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Unable to initiate
Unable to persevere
Easily distracted
Coaching needed
Cueing needed
Understanding difficult
Unable to follow rules
Decision making difficult
Noise overwhelms
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Common Behavioral Outcomes
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Unable to monitor personal behavior
Increased anxiety (cannot grasp reality)
Depression (reality or chaotic chemistry)
Mood swings (reality or chaotic chemistry)
Difficulty seeing another point of view
Impulsive behavior (especially frontal lobe)
More easily agitated (especially frontal lobe)
Egocentric behaviors (others don’t exist)
Unaware of the cues for expected behavior
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Adjusting to the New Normal
• Physical expectations must change
• Cognitive expectations must change
• Behavioral expectations must change
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Each Situation is Unique
• Each injury results from a event with a
specific emotional meaning.
• Each injury causes unique damage.
• Each injury happens to a unique
individual.
• Each path to recovery will be unique.
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Brain Injury & Families
• Affects each family differently.
• Modifies the roles and responsibilities of
family members.
• Changes in a loved one can be so drastic
that it seems a stranger came home from
the hospital.
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Family’s Grief & Loss
Possible change in relationships, dreams for
the loved one, responsibilities as
caregiver, personal freedom, lifestyle,
income and assets.
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Survivors May be Out of Touch
• Nothing has happened.
• I don’t need or want help.
• I will be back to my old life in a few days,
weeks, or months.
• No sense of time, day/night, weekday vs.
weekend, holidays, weather.
• May misread situations and react too
slowly, too little or too strongly.
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Survivors May Feel Lost
• I feel like a stranger on an alien planet with
unfamiliar language and customs.
• I feel that I am buried alive.
• I don’t know who I am or who I was.
• I feel totally alone because I don’t
recognize faces or remember my friends
or family.
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Survivor’s Grief & Loss
Possible loss of identity, self-esteem, selfcontrol, expression/communication,
independence, relationships, mobility,
vocational/career identity, productivity,
income and assets.
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Impact on Children
• Within a year, all prior friends are gone.
• Within a year, pre-event achievement no
longer ensures school success.
• Maturation is stalled at the event age so
deficits become more evident over time.
• No PA Medicaid rehabilitation for children.
• School IEP rarely appropriate and does
not focus on rehabilitation or recovery.
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Federal Mandates
for Children
• All disabled PA children are Medicaid-eligible.
• All Medicaid-eligible children are federally
entitled to all necessary services to ameliorate
whatever condition they have according to
E.P.S.D.T. §1396(d)(r)(5) up to age 21.
• School children with brain injury and with
traumatic brain injury are to be accommodated
under §504 and appropriately served within
special education under I.D.E.A. as needed.
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Impact on Adults
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Within a year, all prior friends are gone.
Over 90% of marriages dissolve.
The parent/child relationship is damaged.
Careers & educational goals shrink.
Extended family networks are destroyed.
Community roles disappear.
Financial capacity is eliminated.
No PA Medicaid rehabilitation for adults.
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State Rehab for 0.105% of Adults
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DPW Medical Assistance
DPW OBRA Waiver
DPW CommCare Waiver
DOH Head Injury Program
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Total in rehab
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Total needing rehab 458,000
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Neurons Repair Slowly
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Maximize brain repair & restoration with rest.
Comprehend & accept strengths & limitations.
Relearn old concepts, habits, & skills.
Master compensatory strategies and/or assistive
technology.
• Make new friends.
• Create a new life of meaning, joy & value.
COULD YOU DO THIS WITHOUT HELP?
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Restoration – Hyperbaric Oxygen
• Dr. Paul Harch S.P.E.C.T. report at
www.abin-pa.org, Education.
• Hospitals provide chamber or treadmill.
• First used for divers with the “bends”
• Medicare and Aetna approve hyperbaric
oxygen for many diagnoses.
• Medicaid covers childrens claims with
demonstrated improvements.
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Restoration - Hyperbaric Oxygen
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Restoration - Homeopathy
• Journal of Head Trauma Rehabilitation, 14:6,
December 1999, p. 521. A randomized, doubleblind placebo-controlled, clinical NIH Pilot Study
using homeopathy at Spaulding Rehabilitation
Hospital, a federal TBI Model Systems facility.
• “The treatment group subjects reported a highly
significant reduction on scales measuring
difficulty functioning in situations commonly
encountered in daily life and a significant
decrease in the reported frequency of ten most
commonly reported symptoms of MTBI.”
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Restoration - Chiropractic
• Impaired arterial blood flow to the brain as a result of a
cervical subluxation: a clinical report. Risley, WB. Journal
of the American Chiropractic Association, June 1995,
pp.61-63. 15,000 patients. Documented by Doppler
studies. Reversed by C-1, C-2 adjustment.
• Report of the State Supervisor of Chiropractors of
Kentucky In Connection with Kentucky Houses of
Reform, Greendale, Kentucky, Marshall, L.T., Lexington,
Kentucky (December 1, 1931). 9/3/1930 (540 boys) to
12/1/1931 (335 boys) with 244 treated, 144 paroled.
Teachers asked for a permanent chiropractor and stated
that the boys improved in demeanor and performance
from the first adjustment. Chiropractic discontinued.
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Stimulate the Brain to Repair
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Assure a relaxed pace.
Base activities on personal preferences.
Re-train for prior skills.
Identify and utilize strengths.
Teach compensatory strategies.
Encourage new interests.
Plan for pleasure every day.
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Promote Rest for Brain Re-wiring
• Initially, the brain is exhausted from struggling
with swelling and physical damage.
• Next, the brain works constantly to repair
neurons and rebuild neural networks,
inefficiently at first.
• Activities of daily living are exhausting.
• Periodically, the brain shuts down to streamline
neural networks to improve cognitive efficiency
and complexity.
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Plan for Success
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Anticipate stressors
Avoid or minimize stressors
Incorporate soothing strategies
Plan for mutual signals
Recognize impending meltdown & divert
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Reduce Communication Stress
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Speak slowly.
Phrase questions for a yes or no answer.
Accept/offer alternate ways of responding.
Simplify or offer simple choices.
Gently divert from difficult topics.
Remain calm at all times.
Do not say “No”. Ask questions instead.
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Reduce Performance Stress
• If tasks are not completed, use coaching,
small steps, cue cards, timers, etc.
• If tasks are unfamiliar, give easier tasks.
• Eliminate responsibilities that are ignored.
• Rehearse forgotten skills.
• If strong interests exist, assist in pursuing.
• Do not draw attention to failure.
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Reduce Demands on Memory
• For current events, use a memory book.
• For poor future memory, use date book.
• If people or faces are unfamiliar, practice
with pictures and remind.
• Use timer, alarm watches, posters, picture
cards, computers, etc., for reminders.
• Follow a routine.
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Reduce Environmental Stress
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For frustration, reduce demands.
For confusion in a group, remain close by.
If better alone, assure quiet time alone.
If easily tired, assure rest breaks.
If noise overwhelms, minimize noise.
If reaction time is slow, plan for safety.
Simplify the environment to minimize
visual and spatial confusion & distraction.
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Structure
• Each survivor and family member needs a
schedule.
• The environment must be kept organized.
• Calendars, notebooks, wall charts, and visual
aids can serve as reminders, but do not
overwhelm anyone with too much information.
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Consistency & Repetition
• Remain consistent in what you do
• Remain consistent in what you expect
• Model the behavior you want to encourage
• Provide a feeling of safety through predictability.
• Use frequent repetition to promote new learning.
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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 is a prescription for failure.
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Minimizing Distractions
Remove distractions
to minimize overstimulation
and cognitive overload.
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Grief Complicates Recovery
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Denial
Anger
Bargaining
Depression
Acceptance
Unfolding awareness of loss
Overlapping & incomplete stages of grief
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Signs of Depression
• 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
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Anticipate Your Challenges
• Learn to anticipate when you will become
overwhelmed (hungry, tired, ill, confused)
• Identify specific situations or events (changes in
routine, dealing with difficult tasks or individuals)
• Identify signals that you are becoming upset
(facial expressions, body language, choice of
words, sighing)
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Anticipating Stressful Events
• Anticipate
• Avoid
• Minimize impact
For example, if large family gatherings or
crowded stores are cognitively
overwhelming, you may not want to stay
very long.
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Possible Stress Relievers
• eating
• closing your eyes
• resting
• taking deep breaths
• getting a hug
• reading
• TV
• taking a walk
• playing solitaire
• taking a shower
YES
Sometimes
NO
Don’t
know!
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Make Your Action Plan
• Work together with family or friends to create a
action plan for each potentially overwhelming
situation - an advance plan will help everyone to
remain calm.
• Know when to seek the help of a professional –
you don’t have to do it all yourself.
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Build on Your Strengths
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Remain involved in activities to avoid boredom
Stay connected to prevent social isolation
Be as independent as possible
Accept coaching, welcome encouragement and
reward yourself for positive behavior
• Understand that everyone may be doing their
best very in difficult circumstances
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Support Systems
Develop a support system for yourself and
your family to prevent social isolation.
This could include family, friends, support
groups, a mentor, a local church group,
social and recreational groups in the
community, and your local Independent
Living Center.
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Get Involved
Daily activities like returning to work,
volunteering, taking a class, and
participating in community activities will
provide a structured routine, decrease
social isolation, increase self-esteem and
promote recovery.
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Emphasize 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 as responsible as you can, and learn
from your mistakes.
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Things to Remember
• Every individual is different, every injury is
unique, and improvement happens with time!
• Understand everyone’s current abilities and
limitations.
• Listen to your loved ones.
• Treat each other in an age appropriate manner.
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Self-Determination
Each person needs to have control over his
or her own life.
Without such control, dissatisfaction,
frustration, resentment and depression are
likely to occur.
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Golden Rules
• Identify the current physical, cognitive and
behavioral limitations.
• Plan and practice your rehabilitative
behaviors to match current requirements
as guided by the neuropsychologist.
• Fade away your rehabilitative behaviors
slowly as the person regains function, but
continually assess while gains stabilize.
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Behavioral Assistance
Professionals who can assist you with
behavioral challenges include:
• Neuropsychologists who can assess the
relationships between the brain injury, the
behavior and cognition;
• Neuropsychiatrists who can prescribe
medications to address mood, thinking or
behavior.
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A Bureau of Brain Injury?
• 2005 - Brain injury Work Group
• 2006 - Brain Injury Recovery Blueprint including
screening, assessment, planning, rehabilitation, training,
standards and cross-systems integration for all children,
and for adults served in any public service system
• 2007 – DPW considered a Bureau of Brain Injury
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A licensing continuum?
1. Pre-vocational & supported housing for
minimally impaired.
2. Structured support (CommCare Waiver).
3. Intense support for minimally functional.
4. LTSR’s (16 beds) for those who are
violent or court ordered.
5. Special nursing homes for those in
coma or minimally conscious.
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Optimize funding?
• Prevent brain injury.
• Eliminate the two-year Social Security
Disability wait for Medicare and add brain
injury rehabilitation.
• Private healthcare insurance coverage.
• Re-activate Auto CAT Fund premiums.
• Provide rehab to all children.
• Rehab all adults while in state systems.
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ABIN-PA Programs & Resources
• E-List: frequent emails on brain injury and
disability topics.
• InfoLine: free, trained volunteers.
• Newsletter: free monthly snail-mail on
organization activities, features.
• County Education Programs: free.
• Website: brochures, PowerPoints,
resources, support groups.
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RESOURCES
• Acquired Brain Injury Network
– 215-699-2139 www.abin-pa.org
• Brain Injury Association
– 800-444-6443 www.biausa.org
• Brain Injury Association of NJ
– 732-738-1002 www.bianj.org
• Brain Injury Association of PA
– 866-635-7097 www.biapa.org
• Brain Injury Help Line & Head Injury Program
– 866-412-4755
• CommCare (TBI) Waiver 800-757-5042
• Special Education Consult Line 1-800-879-2301
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CONTACT
Acquired Brain Injury Network of
Pennsylvania, Inc.
2275 Glenview Drive
Lansdale, PA 19446-6082
InfoLine 215-699-2139
[email protected]
www.abin-pa.org
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