The Long Winding Road In Brain Injury-- How Our World Is Changing

The Long & Winding Road In Brain Injury: How Our World Is Changing The Human Brain 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 Parietal Lobe • Sense of touch • Differentiation: size, shape, color • Spatial perception • Visual perception Frontal Lobe Occipital Lobe Temporal Lobe Occipital Lobe • Vision Cerebellum Brain Stem Cerebellum • Balance • Coordination • Skilled motor activity Temporal Lobe • Memory • Hearing • Understanding language (receptive language) • Organization and sequencing Brain Stem • Breathing • Heart rate • Arousal/consciousness • Sleep/wake functions • Attention/concentration Traumatic Brain Injury Defined A blow or jolt to the head arising from blunt or penetrating trauma or from acceleration/deceleration forces in the skull that result in a decreased level of consciousness. Our World CASE MANAGEMENT/ SERVICE COORDINATION COMMUNITY Emergency Department Acute Care Out Patient Rehab Education Family Support Services Housing Prevention PreHospital, Emergency Medical Services Physicians Vocational Training/Employment Inpatient Rehabilitation Long Term Services and Supports RESEARCH & PUBLIC POLICY Changes After Brain Injury Physical Changes  Motor coordination  Hearing and visual changes  Spasticity and tremors  Fatigue and/or weakness Taste and smell  Balance  Mobility  Speech  Seizures Cognitive Changes           Memory Decision making Planning Sequencing Judgment Processing speed Organization Self-perception Problem solving Thinking Behavior Changes  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 TBI in the US by Cause Suicide, 1% Other Transport, 2% Pedal Cycle (non MV), 3% Assault, 11% Motor VehicleTraffic, 20% From CDC: Average annual percents, 1995-2001; ED visits, hospitalizations, and deaths combined Unknown, 9% Other, 7% Falls, 28% Struck By/Against, 19% TBI in the US 51,000 Deaths 290,000 Hospitalizations TBIs occur in the US each year. 1.6 million At least 1,224,000 Emergency Department Visits ??? Receiving Other Medical Care or No Care Data for 2003 from J. A. Langlois, CDC, Sept 2006. Comparative Incidence 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 Alzheimer’s disease 5 million Americans with persistent mental illness 5.3 million Americans with traumatic brain injury 7.3 million Americans with mental retardation US Federal $ Allocation Per Person Per Year: HIV / AIDS: $18,111.00 MR / DD: 4,635.00 Breast Cancer: 295.00 TBI: 2.55 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) 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 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 What Do People Need? •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 •Long-term Residential •Personal Care •Recreation/ Socialization •Respite •Special Education •Supported Employment •Substance Abuse Treatment •Rehabilitative Therapies •Transportation •Vocational Services 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) 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, Nat’l Center on Caregiving, 2006 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) Key Federal Policies 1981 – 1987 – 1989 – 1990 – 1991 – 1996 – 2000 – Omnibus Budget Reconciliation Act TBI Model Systems Begin Federal Interagency Task Force Report Individuals with Disabilities Education Act Defense & Veterans Brain Injury Center TBI Act TBI Act Reauthorization TBI/ABI HCBS Waivers 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 Key Federal Policies 1981 – 1987 – 1989 – 1990 – 1991 – 1996 – 1999 – 2004 – Omnibus Budget Reconciliation Act TBI Model Systems Begin Federal Interagency Task Force Report Individuals with Disabilities Education Act Defense & Veterans Brain Injury Center TBI Act Ticket to Work/Work Incentives Act Assistive Technology Act Brain Injury & The Military Defense & Veterans Brain Injury Center National Defense Authorization Act Heroes At Home The TBI Act… A lesson in perseverance 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 P&A - $6 million (up from $2.97 million in FY 06) Legislative Action Center www.biausa.org Elevate NCMRR within NIH Working to elevate the National Center for Medical Rehabilitation and Research for more brain injury attention. VISION  VOICE  VALUE Cognitive Rehab Statement Releasing cognitive rehabilitation position paper to fight arbitrary coverage denials. VISION  VOICE  VALUE Future of Public VR Participating in think-tank discussions to improve public vocational rehabilitation services. VISION  VOICE  VALUE “Mental Impairment Listings” Revising descriptions for SSDI qualification. VISION  VOICE  VALUE Medicare Endorsed repeal of outpatient therapy caps. VISION  VOICE  VALUE Medicaid Opposed further erosion of provider reimbursement rates. VISION  VOICE  VALUE Legal Settlements Opposed subrogating legal settlements to insurance companies and state agencies. VISION  VOICE  VALUE The Map Story Our Mission To create a better future through brain injury prevention, research, education and advocacy. We have 41 state affiliates! BIAA State Affiliates Existing In Development Together, we are the only nationwide organization representing 5.3 million individuals with brain injury, their families, clinicians and professionals who provide treatment and services. and the researchers, Together, we are a $15+ million advocacy network. Together, we answer 100,000 individual requests for help each year. Together, we circulate 2+ million pieces of information each year. We have a 25-year record of state and federal policy achievement. We’ve generated millions of $$$ for research, services and support. What You Can Do 1. Advocate at Federal & State Levels – Join Legislative Action Center 2. Increase Awareness – Distribute Wristbands, Window Clings & Awareness Month Materials 3. Support State Brain Injury Associations – Become A Member, Attend Events, Join Committees, Write Newsletter Articles 4. Write A Check – Become A Corporate Sponsor, Donate Annually; Purchase from Bookstore “Be the Change You Want to See in the World.” --Mohandas K. Ghandi 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@biausa.org