The Long

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The Long Winding Road In Brain Injury How Our
World Is Changing
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The Human Brain
Parietal Lobe Sense of touch
Differentiation size, shape, color Spatial
perception Visual perception
Frontal Lobe Initiation Problem solving
Judgment Inhibition of behavior
Planning/anticipation Self-monitoring Motor
planning Personality/emotions Awareness of
abilities/limitations Organization
Attention/concentration Mental flexibility
Speaking (expressive language)
Parietal Lobe
Frontal Lobe
Occipital Lobe
Occipital Lobe Vision
Temporal Lobe
Cerebellum Balance Coordination Skilled
motor activity
Cerebellum
Brain Stem
Temporal Lobe Memory Hearing Understanding
language (receptive language) Organization
and sequencing
Brain Stem Breathing Heart rate
Arousal/consciousness Sleep/wake functions
Attention/concentration
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Traumatic Brain Injury Defined

• A blow or jolt to the head arising from blunt or
  penetrating trauma or from acceleration/decelerati
  on forces in the skull that result in a decreased
  level of consciousness.

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Our World
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Changes After Brain Injury
Physical Changes
Cognitive Changes
Behavior Changes

• ? Motor coordination
• ? Hearing and visual changes
• ? Spasticity and tremors
• Fatigue and/or weakness
• Taste and smell
• ? Balance
• ? Mobility
• ? Speech
• ? Seizures

• ? Memory
• ? Decision making
• ? Planning
• Sequencing
• Judgment
• ? Processing speed
• ? Organization
• Self-perception
• Problem solving
• Thinking

• ? Depression
• ? Mood swings
• Disinhibition
• Lack of response to social cues
• Problems with emotional control
• ? Difficulty relating to others
• Reduced self-esteem
• Stress, anxiety, and frustration

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TBI in the US by Cause
From CDC Average annual percents, 1995-2001 ED
visits, hospitalizations, and deaths combined
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TBI in the US
At least 1.6 million TBIs occur in the US each
year.
51,000 Deaths
290,000 Hospitalizations
1,224,000 Emergency Department Visits
??? Receiving Other Medical Care or No Care
Data for 2003 from J. A. Langlois, CDC, Sept 2006.
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Comparative Incidence
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Comparative Prevalence
From websites of national organizations as of
April 2000
400,000 with spinal cord injuries
500,000 Americans with cerebral palsy
2 million Americans with epilepsy
4 million Americans with stroke disabilities
4 million Americans with Alzheimers disease
5 million Americans with persistent mental illness
5.3 million Americans with traumatic brain injury
7.3 million Americans with mental retardation
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US Federal Allocation

• Per Person Per Year
•  
• HIV / AIDS 18,111.00
• MR / DD 4,635.00
• Breast Cancer 295.00
• TBI 2.55

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Cost to Society

• 25 billion per year in 1989
  (Federal Interagency Task Force Report, NIH)
• 48 billion per year in 1995
  (Lewin Report)
• 60 billion per year in 2000 (CDC
  Fact Sheet)

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Length of Stay (Acute)

• Hospital Stays
• 1990 to 2004 22 to 29 Days
• 1995 20 Days
• 1996 16 Days
• Acute Care Daily Charge - 550
• Rate of Increase is 10 more than more than
  national medical care prices

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Length of Stay (Rehabilitation)

• Rehab Setting 1990 - 1996
• Daily rehabilitation LOS declined average of 3.65
  days annually
• Charges increased an average of 83 or 7
• Increases roughly comparable general prices

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What Do People Need?

• Long-term Residential
• Personal Care
• Recreation/ Socialization
• Respite
• Special Education
• Supported Employment
• Substance Abuse Treatment
• Rehabilitative Therapies
• Transportation
• Vocational Services

• Assessment/Evaluation
• Behavioral Services
• Community/Family Education
• Companion Services
• Durable Medical Equipment
• Emotional Support
• Financial Assistance
• Housing
• Individual/Family Counseling
• Legal Advice
• Life Skills Training

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Economic Value of Caregivers

• 44 million people provide unpaid assistance to
  older Americans and adults with disabilities.
  (National Alliance for
  Caregiving AARP, 2004)
• Estimated annual value of unpaid caregiving is
  257 billion. (American
  Association of Geriatric Psychiatry, 2002)

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Caregivers Are Vulnerable

• Face Numerous Health Risks
• Receive Little Support
• Have More Workplace Challenges
• Greater Out-of-Pocket Medical Expenses
• Serve as Care Managers Case Managers

From Family Caregiver Alliance, Natl Center on
Caregiving, 2006
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GAO Report
As families exhaust their resources, the public
sector pays for a greater share of the services
received.
TBI Programs Supporting Long-Term Services in
Selected States (HEHS-98-55)
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Key Federal Policies

• 1981 Omnibus Budget Reconciliation Act
• 1987 TBI Model Systems Begin
• 1989 Federal Interagency Task Force Report
• 1990 Individuals with Disabilities Education
  Act
• 1991 Defense Veterans Brain Injury Center
• 1996 TBI Act
• 2000 TBI Act Reauthorization

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TBI/ABI HCBS Waivers
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TBI Model Systems

• 16 Centers Data Repository
• Develop and Validate Diagnostic Procedures
  Instruments, Treatment Interventions, Outcome
  Measures
• Contribute to Longitudinal Study extending to 15
  years post-injury
• Pivotal role in building national capacity
  through high quality research
• Asking Congress for 15 million

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Key Federal Policies

• 1981 Omnibus Budget Reconciliation Act
• 1987 TBI Model Systems Begin
• 1989 Federal Interagency Task Force Report
• 1990 Individuals with Disabilities Education
  Act
• 1991 Defense Veterans Brain Injury Center
• 1996 TBI Act
• 1999 Ticket to Work/Work Incentives Act
• 2004 Assistive Technology Act

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Brain Injury The Military

• Defense Veterans Brain Injury Center
• National Defense Authorization Act
• Heroes At Home

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The TBI Act
A lesson in perseverance
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TBI Act Appropriations Requests

• CDC - 9 million (up
  from 5.3 million in FY 06)
• HRSA States - 15 million (up from
  5.94 million in FY 06)
• HRSA PA - 6 million (up from
  2.97 million in FY 06)

Legislative Action Center www.biausa.org
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Elevate NCMRR within NIH

• Working to elevate the National
  Center for Medical Rehabilitation and
  Research for more brain injury attention.

VISION ? VOICE ? VALUE
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Cognitive Rehab Statement

• Releasing cognitive rehabilitation position paper
  to fight arbitrary coverage denials.

VISION ? VOICE ? VALUE
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Future of Public VR

• Participating in think-tank discussions to
  improve public vocational rehabilitation services.

VISION ? VOICE ? VALUE
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Mental Impairment Listings

• Revising descriptions for SSDI qualification.

VISION ? VOICE ? VALUE
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Medicare

• Endorsed repeal of outpatient
  therapy caps.

VISION ? VOICE ? VALUE
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Medicaid

• Opposed further erosion of provider
  reimbursement rates.

VISION ? VOICE ? VALUE
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Legal Settlements

• Opposed subrogating legal settlements to
  insurance companies and state agencies.

VISION ? VOICE ? VALUE
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The Map Story
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Our Mission

• To create a better future through brain injury
  prevention, research, education and advocacy.

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• We have 41 state affiliates!

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BIAA State Affiliates
In Development
Existing
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• Together, we are the only nationwide organization
  representing 5.3 million individuals with brain
  injury, their families,

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• and the researchers, clinicians and professionals
  who provide treatment and services.

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• Together, we are a 15 million advocacy network.

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• Together, we answer 100,000 individual requests
  for help each year.

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• Together, we circulate 2 million pieces of
  information each year.

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• We have a 25-year record of state and federal
  policy achievement.

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• Weve generated millions of for research,
  services and support.

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What You Can Do

• Advocate at Federal State Levels
• Join Legislative Action Center
• Increase Awareness
• Distribute Wristbands, Window Clings
  Awareness Month Materials
• Support State Brain Injury Associations
• Become A Member, Attend Events, Join
  Committees, Write Newsletter Articles
• Write A Check
• Become A Corporate Sponsor, Donate Annually
  Purchase from Bookstore

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Be the Change You Want to See in the
World.--Mohandas K. Ghandi
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Thank You!

• Susan H. Connors
• President and CEO
• Brain Injury Association of America
• 8201 Greensboro Drive, Suite 611
• McLean, VA 22102
• 703-761-0750
• shconnors_at_biausa.org