Brain Injury Association of America SS 1 January 2003
TBI In The 21st Century:
Challenges and Opportunities
A presentation for:
ISU-Inst. of Rural Health
February 6, 2003
Allan I BergmanPresident/CEO
www.biausa.org
Brain Injury Association of America SS 2 January 2003
Organizational Histories
• 1919 – Ohio Society for Crippled Children
• 1940 – National Foundation for the Blind
• 1948 - Association for Retarded Children
• 1948 - United Cerebral Palsy Association
• 1971 - Independent Living Center/Berkeley
• 1974 - People First
Brain Injury Association of America SS 3 January 2003
Organizational Histories (cont.)
• 1980 – National Head Injury Foundation
2001 renamed as the
Brain Injury Association
Of America
Brain Injury Association of America SS 4 January 2003
Disability Legislative History
• 1904: Library of Congress Braille and Recorded Materials
• 1928: Vocational Rehabilitation Program
• 1935: Crippled Children’s Services
• 1961: President’s Panel on Mental Retardation
Brain Injury Association of America SS 5 January 2003
Disability Legislative History
• 1963: Mental Retardation Facilities and Community Mental Health Centers Act
• 1973: National Council on Disability
• 1973: Independent Living Centers
• 1975: Education for All Handicapped Children Act
Brain Injury Association of America SS 6 January 2003
Disability Legislative History
• 1975: Protection & Advocacy Services for Persons with Developmental Disabilities
• 1986: Protection & Advocacy Services for Persons with Mental Illness
• 1990: “TBI” added to Special Education
• 1990: Americans with Disabilities Act
Brain Injury Association of America SS 7 January 2003
Disability Legislative History
• 1996: Traumatic Brain Injury Act
• 2000: Traumatic Brain Injury Act Amendments
• 2001: Congressional Brain Injury Task Force
• Is your Congressperson a Member?
Brain Injury Association of America SS 8 January 2003
To create a better future through
brain injury prevention,
research, education
and advocacy.
Mission Statement
Brain Injury Association of America SS 9 January 2003
Web Sitewww.biausa.org
• Public Policy Corner
• And
• Legislative Action Center
Brain Injury Association of America SS 10 January
2003
www.biausa.org412,000 unique visitors in
2001
Improved and Expanded Site September 2002
Brain Injury Association of America SS 11 January
2003
Family HelplineOver 17,000 calls in 2002
Se Habla Espanol
Brain Injury Association of America SS 12 January
2003
Traumatic Brain Injury An insult to the brain, not of degenerative or
congenital nature, caused by an external physical force that may produce a diminished or altered state of consciousness, which results in an impairment of cognitive abilities or physical functioning and/or a disturbance of behavioral or emotional functioning.
Brain Injury Association of America SS 13 January
2003
“Traumatic Brain Injury and Concussion in Sports”
• “The terms concussion and mild TBI are used interchangeably as is consistent with the U.S. medical literature.”
JAMA, September 8, 1999
James P. Kelly, M.D.
Brain Injury Association of America SS 14 January
2003
Consequences Of Brain InjuriesCognitive Consequences Can Include:
• Short-term memory loss; long-term memory loss
• Slowed ability to process information
• Trouble concentrating or paying attention for periods of time
• Difficulty keeping up with a conversation;other communication difficulties such as word finding problems
• Spatial disorientation
• Organizational problems and impaired judgment
• Unable to do more than one thing at a time
• A lack of initiating activities, or once started, difficulty in completing tasks without reminders
Brain Injury Association of America SS 15 January
2003
Consequences Of Brain Injuries
Physical Consequences Can Include:
• Seizures of all types
• Muscle spasticity
• Double vision or low vision, even blindness
• Loss of smell or taste
• Speech impairments such as slow or slurred speech;
• Headaches or migraines
• Fatigue, increased need for sleep;
• Balance problems
Brain Injury Association of America SS 16 January
2003
Consequences Of Brain Injuries
Emotional Consequences Can Include:
• Increased anxiety
• Depression and mood swings
• Impulsive behavior
• More easily agitated
• Egocentric behaviors; difficulty seeing how behaviors can affect others
Brain Injury Association of America SS 17 January
2003
Brain Injury Association of America SS 18 January
2003
Statistics
• At least 1.5 million Americans sustain a traumatic brain injury each year
• Each year, 80,000 Americans experience the onset of long-term disability following TBI
• More than 50,000 people die every year as a result of TBI
• The cost of TBI in the U.S. is estimated to be $48.3 billion annually
Brain Injury Association of America SS 19 January
2003
Public Perceptions of Traumatic Brain Injuries
Harris Poll
May 18-June 4, 2000
Brain Injury Association of America SS 20 January
2003
Comparison of Annual IncidenceA comparison of Traumatic Brain Injury and Leading injuries or Diseases
2,000,000
1,500,000
1,000,000
500,000
100,000
10,000
Multiple Sclerosis 10,4000
Spinal Cord Injuries 11,000
HIV/AIDS 43,681
Breast Cancer
176,3000
Traumatic Brain Injuries 1,500,000
Brain Injury Association of America SS 21 January
2003
At least 5.3 million Americans – a little more than 2 percent of the U.S. population – currently
live with disabilities resulting from
traumatic brain injury.
Brain Injury Association of America SS 22 January
2003
Injury and Disability Prevalence Rates
National organizations’ web sites, 4/2000
500,000 with Cerebral Palsy
2 million Americans with Epilepsy
3 million with Stroke disabilities
4 million with Alzheimer’s Disease
5 million with persistent mental illness
7.3 million Americans with mental retardation
400,000 w/ Spinal Cord Injuries
5.3 million with TBI disability
Brain Injury Association of America SS 23 January
2003
Trends In TBI Incidence
22% decline in TBI mortality rates, 1979- 1992 (Sosin et al., JAMA 1995; 273:1778)
51% decline in TBI hospitalization rates, 1980 to 1995 (Thurman & Guerrero, JAMA 1999; 282:954)
Brain Injury Association of America SS 24 January
2003
TBI Rates By Age And Cause14 States, 1995-96
Transport
Falls
Firearms
Brain Injury Association of America SS 25 January
2003
TBI Percent By Cause14 States, 1995-96
Falls26%
Firearms8%
Other Assault9%
Transport45%
Other/Unknown 12%
Brain Injury Association of America SS 26 January
2003
Children and TBI
• Traumatic Brain Injury is the Leading Cause of Death and Injury-Related
Disability Among Children and Young Adults.
Brain Injury Association of America SS 27 January
2003
IDEA Definition of TBI
“An acquired injury to the brain caused by an external physical force resulting in total or partial functional disability or psychosocial impairment, or both, that adversely affects a child’s educational performance. The term applies to open or closed head injuries resulting in impairments in one or more
Brain Injury Association of America SS 28 January
2003
IDEA Definition of TBI, cont.
Areas, such as cognition, memory, language, attention, reasoning, abstract thinking, judgment, problem-solving, sensory, perceptual and motor abilities, psychosocial behavior, physical function, information processing and speech. The term does not apply to brain injuries that are congenital or
Brain Injury Association of America SS 29 January
2003
IDEA Definition of TBI, cont.
Or degenerative, or to brain injuries induced by birth trauma.”
34CFR300.7(c)(12)
Brain Injury Association of America SS 30 January
2003
Students Ages 6-21
Total: 5,541,166
TBI: 12,933
Special Education Data 1998-1999
Brain Injury Association of America SS 31 January
2003
July-September 2000
46 Respondents (43 States and three Non-State jurisdictions)
OSEP “Forum” Survey of 53 State Education Agencies
Brain Injury Association of America SS 32 January
2003
Professional Development:
No State reported TBI certification
Oklahoma and Nevada reported teacher endorsement
10 respondents indicated availability of pre-service courses
36 respondents reported having in-service training, workshops, or conferences for educators
OSEP Forum Survey (Cont.)
Brain Injury Association of America SS 33 January
2003
TBI Contact Person:
• 34/46 identified a contact person
• Services Provided
• Professional development (23)
• One-on-one consultation and technical assistance (21)
• Liaison with state TBI projects and other groups (29)
• Parent contact/workshops (4)
OSEP Forum Survey (Cont.)
Brain Injury Association of America SS 34 January
2003
Evolution of Disability Services
• Institutionalization: 1848 – 1970’s
• Deinstitutionalization and Community-Based Programs: 1976 – 1986
• Community Membership and Support: 1987 – Today……….
Inclusion; Circles of Support; Personal Futures Planning; Self Determination
Brain Injury Association of America SS 35 January
2003
Brain Injury Association, Inc.
DISABILITY POLICY
FOR THE
NEW MILLENIUM
Brain Injury Association of America SS 36 January
2003
“(3) disability is a natural part of the human experience and in no way diminishes the right of individuals to—
“(A) live independently;
“(B) enjoy self-determination;
“(C) make choices;
“(D) contribute to society;
“(E) pursue meaningful careers; and
“(F) enjoy full inclusion and integration in the economic, political, social, cultural, and educational mainstream of American society
Brain Injury Association of America SS 37 January
2003
NIH Consensus Development Conference, October 1998
Rehabilitation of Persons with
Traumatic Brain Injury
Brain Injury Association of America SS 38 January
2003
NIH Panel Recommendations
• Rehabilitation Services should be matched to the needs, strengths, and capacities of each person with TBI and modified as those needs change over time.
• Rehabilitation Programs for persons with moderate or severe TBI Should be interdisciplinary and comprehensive.
Brain Injury Association of America SS 39 January
2003
NIH Panel Recommendations-2
• Families and significant others provide support for many people with TBI. To do so effectively, they themselves should receive support. This can include in-home assistance from home health aides or personal care attendants, daytime and overnight respite care, and ongoing
counseling.
Brain Injury Association of America SS 40 January
2003
NIH Recommendations-3
• Rehabilitation efforts should include modifications of the individual’s home, social and work environments to enable fuller participation in all venues.
Brain Injury Association of America SS 41 January
2003
NIH Recommendations-4
• Community-based nonmedical services should be components of the extended care and rehabilitation available to persons with TBI. These include but are not necessarily limited to clubhouses for socialization, day programs and social skills development programs, supported living programs and
Brain Injury Association of America SS 42 January
2003
NIH Recommendations-5
• Independent living centers, supported employment programs, formal education programs at all levels, case manager programs to support practical life skill redevelopment and to help navigate through the public assistance and medical rehabilitative care systems, and consumer,
• peer support programs.
Brain Injury Association of America SS 43 January
2003
Any item, piece of equipment or product system whether acquired commercially off the shelf, modified or customized that is used to increase, maintain or improve functional capabilities of individuals with disabilities.
Assistive Technology Device
Brain Injury Association of America SS 44 January
2003
Assistive Technology and People with Cognitive Disabilities
• Brain Injury Association of America
• Moss Rehabilitation
• Temple University
• University of Akron
• Spaulding Rehabilitation
Brain Injury Association of America SS 45 January
2003
NCMRR Funded TBIClinical Trials Network (8
sites)
Brain Injury Association of America SS 46 January
2003
Self Employment Grant -NIDRR• Rural Institute at the University of
Montana• State Affiliates• 20 Small Businesses over 3 Years• Coordination of Multiple Funding
Streams• On-site and Distance Technical Training
and Consultation on Business Planning
Brain Injury Association of America SS 47 January
2003
Analysis of the TBI StateDemonstration Grants
Delaware Oregon
Georgia South Carolina
Illinois Texas
Iowa West Virginia
Mississippi Wisconsin
Oklahoma
John Corrigan, Ph.D.
Brain Injury Association of America SS 48 January
2003
I. Accessibility
Can a person identify and utilize a service(assuming it is available)?
• There needs to be easy access toinformation about needs and resources.
• Arbitrary barriers are created by servicesystem eligibility criteria.
• Some sub-populations more readily fall
Brain Injury Association of America SS 49 January
2003
I. Accessibility, cont.
through the gap in the service system.
• Services are not coordinated.
Brain Injury Association of America SS 50 January
2003
II. AvailabilityWhat needed services do not exist?
• Funding is a major factor in limiting services.
• Rural communities have unique problemsof service availability.
• Lack of transportation limits availability.• Health insurance does not adequately
provide for needed services.
Brain Injury Association of America SS 51 January
2003
II. Availability, cont.
• Treatment for behavioral health needs isoften difficult to obtain.
• Therapies for neurobehavior problems aregenerally insufficient.
• Appropriate and affordable housing islimited.
• Medicaid waivers do not exist or are toolimited in scope.
Brain Injury Association of America SS 52 January
2003
II. Availability, cont.
• Children have special needs that are not
being met.
• Services are not available for the long term
needs of consumers.
Brain Injury Association of America SS 53 January
2003
III. Appropriateness
Are existing resources the right ones for theneeds of the individual?
• Professionals in most service delivery systems lack knowledge and training to serve this population.
• There is dissatisfaction with acuterehabilitation services.
Brain Injury Association of America SS 54 January
2003
III. Appropriateness, cont.
• There is dissatisfaction with employment-
related services.
• The unique needs of this population
contribute to its needs not being met.
Brain Injury Association of America SS 55 January
2003
IV. Acceptability
Does the service enhance the self-actualization of the person using it?
• The individual’s need for self-determinationis often not recognized by service providers.
• Families need more training and educationabout the unique aspects of their role.
Brain Injury Association of America SS 56 January
2003
Brain Injury Association of America SS 57 January
2003
Self Determination 2001
• People With Brain Injury Are
“Speaking Out”
About Quality in Services
National Center on Outcomes Resources
(410) 583-0060
Brain Injury Association of America SS 58 January
2003
Speaking Out
• “I don’t want to feel that I am just getting the same prepackaged deal as everyone else. Make it about ME.”
• “My goals should be just that…MY choice.”
• “Before you ‘release’ me to the community, help me to build a support network.”
Brain Injury Association of America SS 59 January
2003
Brain Injury Association of America SS 60 January
2003
Traumatic Brain Injury Act 2000P.L. 106-310
• CDC Expanded Authority:
- Focus incidence and prevalence studies on children
- Expand surveillance to individuals in institutional settings
- Engage in public education activities
Brain Injury Association of America SS 61 January
2003
Traumatic Brain Injury Act2000 Reauthorization
P.L. 106 – 310• CDC Expanded Authority (continued)
- Study on methodology to obtain incidence and prevalence data
on “mild” TBI- Grants to states for registries
Brain Injury Association of America SS 62 January
2003
Traumatic Brain Injury Act2000 Reauthorization
P.L. 106 – 310• HRSA State Grant Authority Revised and
Expanded:- No state match requirement- Continuation grants beyond planning
and implementation grants
Brain Injury Association of America SS 63 January
2003
Traumatic Brain Injury Act2000 Reauthorization
P.L. 106 – 310• HRSA State Grant Authority Revised and
Expanded:- New grants focus:State Capacity Building –
- Educate consumers and families- Train professionals
Brain Injury Association of America SS 64 January
2003
Traumatic Brain Injury Act2000 Reauthorization
P.L. 106 – 310• HRSA State Grant Authority Revised and
Expanded: - State Capacity Building (continued):
- Develop/improve case management/service coordination
- Develop best practices- Improve data sets- Develop capacity within targeted
communities
Brain Injury Association of America SS 65 January
2003
Traumatic Brain Injury Act2000 Reauthorization
P.L. 106 – 310• HRSA State Grant Authority Revised and
Expanded: - Community Services and Supports:
- Timely Access- Full participation by individuals with TBI
& families in decisions- Includes children
Brain Injury Association of America SS 66 January
2003
Traumatic Brain Injury Act2000 Reauthorization
P.L. 106 – 310• HRSA State Grant Authority Revised and
Expanded: - Community Services and Supports (continued):
- Focus on outreach to unserved and inappropriately served individuals
- Contracts to nonprofits for consumer or family service access training, consumer support, peer mentoring and parent-to-parent programs
Brain Injury Association of America SS 67 January
2003
Traumatic Brain Injury Act2000 Reauthorization
P.L. 106 – 310• HRSA State Grant Authority Revised and
Expanded: - Community Services and Supports (continued):
- Develop individual and family service coordination or case management
systems- Other needs as identified by advisory
board
Brain Injury Association of America SS 68 January
2003
Traumatic Brain Injury Act2000 Reauthorization
P.L. 106 – 310• Newly Created Protection and Advocacy
Services for Individuals with T.B.I.- Information, referrals and advice- Individual and family advocacy- Legal representation- Specific assistance in self-advocacy
Brain Injury Association of America SS 69 January
2003
Traumatic Brain Injury Act2000 Reauthorization
P.L. 106 – 310• Specified Research at N.I.H.
- Emphasis on cognitive disorders and neurobehavioral consequences arising
from T.B.I. including the development, modification and evaluation of therapies and programs of rehabilitation toward reaching or restoring normal capabilities in areas such as reading, comprehension, speech, reasoning and deduction.
Brain Injury Association of America SS 70 January
2003
TBI Act Appropriations
• CDC
• 1997 - $2,600,000
• 1998 - $2,812,000
• 1999, 2000, 2001, 2002 - $3,000,000/year
• Request for 2003 -
• $7,000,000
Brain Injury Association of America SS 71 January
2003
TBI Act Appropriations
• HRSA State Grant Program
• 1997 - $2,857,000
• 1998 - $3,000,000
• 1999, 2000, 2001 - $5,000,000/year
• 2002 - $6,000,000
• 2003 Request - $9,800,000
Brain Injury Association of America SS 72 January
2003
TBI Act Appropriations
• HRSA Protection & Advocacy Services
• 2002 - $1,500,000
• 2003 Request - $5,000,000
Brain Injury Association of America SS 73 January
2003
TBI Act Appropriations
• NIH / NCMRR
• 2002 - $5,000,000
• 2003 Request - $5,000,000
• NIH / NINDS
• 1997 to 2002 - $5,000,000/year
• 2003 Request - $10,000,000
Brain Injury Association of America SS 74 January
2003
Congressional Brain Injury Task Force
• Co-Chairs: James Greenwood (R-PA) and
Bill Pascrell (D-NJ)
• Founded April 2001
• 61 Members Today
Brain Injury Association of America SS 75 January
2003
Americans With
Disabilities Act
Brain Injury Association of America SS 76 January
2003
A.D.A. – Disability
The term “disability” means, with respect to an individual:
• A physical or mental impairment that substantially limits one or more of the
major life activities of such individual;
• A record of such an impairment; or
• Being regarded as having such an impairment.
Brain Injury Association of America SS 77 January
2003
Major Life Activities
• Caring for oneself
• Performing manual tasks
• Walking
• Seeing
• Hearing
• Speaking
• Breathing
• Learning
• Working
Brain Injury Association of America SS 78 January
2003
TBI Act of 2000 - Integration
• “(2) BEST PRACTICES-
• (A) IN GENERAL – State services and supports provided under a grant under this section shall reflect the best practices in the field of traumatic brain injury, shall be in compliance with title II of the Americans with Disabilities Act of 1990, and shall be
Brain Injury Association of America SS 79 January
2003
TBI Act of 2000- Cont.
• …supported by quality assurance measures as well as state-of-the-art health care and integrated community supports, regardless of the severity of injury.”
Brain Injury Association of America SS 80 January
2003
The Disability Community As Defined by The New Freedom Initiative Over 54 million Americans Living with a disability
– 20% of US Population
Almost half of these individuals have a severe disability affecting their ability to see, hear, walk or perform other basic functions of life
More than 25 million family caregivers and millions more who provide aid and assistance to people with disabilities
- January 1, 2002
DHHS
Brain Injury Association of America SS 81 January
2003
Medicaid Expenditures for Long-Term Care Services 1989-2001(in thousands of dollars)
1989 2001 ACRG 1989-2001
Personal Care 1,656,998 5,254,198 10.1%
HCBS Waiver 943,300 14,382,573 25.5%
Home Health 656,553 2,572,840 12.1%
ICF 8,902,074
SNF 6,766,109 42,727,565 8.7%
ICF-MR 6,628,208 10,351,051 3.8%
Total Long-Term Care
25,553,242 75,288,226 9.4%
Total Medicaid 58,642,495 214,585,884 11.4%
Brain Injury Association of America SS 82 January
2003
Nursing Home Residents
Age Distribution:Under 65 years - 8.5%65-74 years - 12.3%75-84 years - 32.8%85 years and over - 45.9%
Source: National Center for Health Statistics March 1, 2000
All families-1997Total: 1,608,700
Brain Injury Association of America SS 83 January
2003
MR/DD74.7%
TBI0.5%
Tech. Dep.0.5%
MI0.2%
Aged2.1%
A/D19.0%
AIDS/ARC0.5%
PD2.5%
FFY 2000 Medicaid HCBS Waiver Expenditures by Target Population
Source: HFCA 64 data, Office of State Agency Financial Management
Brain Injury Association of America SS 84 January
2003
Waivers-People with B.I.-2001• Colorado $5,202,549
• Connecticut $5,034,857
• Florida $1,444,600
• Idaho $ 546,674
• Illinois $5,822,376
• Indiana $1,523,948
• Iowa $2,057,722
Brain Injury Association of America SS 85 January
2003
Waivers-People with B.I.-2001
• Kansas $ 3,407,542
• Minnesota $17,017,589
• New Hampshire $ 5,657,499
• New Jersey $14,557,615
• North Dakota $ 580,982
• Utah $ 1,391,570
Brain Injury Association of America SS 86 January
2003
Waivers-People with B.I.-2001
• Vermont $ 2,151,635
• Wisconsin $14,397,750
TOTAL $80,794,908
Brain Injury Association of America SS 87 January
2003
A Successful Community Life
• Housing
• Health Care and Appropriate Medical Services
• Mental Health/Behavioral Health Services
• Education/Higher Education
• Employment/Supported Employment
• Transportation
Brain Injury Association of America SS 88 January
2003
Successful Community Life - 2• Assistive Technology and Devices
• Leisure and Recreational Activities
• Friends and Relationships; Support Circles
• Community Support Workers
• Customer Choice and Control
• System Infrastructure
• Quality Assurance
Brain Injury Association of America SS 89 January
2003
Brain Injury Association of America SS 90 January
2003
Medical “Model”
VS
Psychosocial “Model”
Brain Injury Association of America SS 91 January
2003
Brain Injury Association, Inc.
FROM A CONTINUUM OF
CARE TO AN ARRAY OF
INDIVIDUAL AND FAMILY
SUPPORTS
Brain Injury Association of America SS 92 January
2003
MedicaidIndependence Plus
May 9, 2002A Demonstration Program for Family or
Individual Directed Community Services
• Person-Centered Planning;
• Individual Budgets;
• Group Living No More Than 4 Persons;
Brain Injury Association of America SS 93 January
2003
Independence Plus (cont.)
• Services Menu:
• Case Management
• Homemaker Services
• Home Health Aide Services
• Personal Care Services
• Adult Day Health Services
Brain Injury Association of America SS 94 January
2003
Independence Plus, cont.
• Habilitation Services
• Respite Services
• Supports Brokerage Services/Functions*
• Fiscal/Employer Agent Services/Functions*
• Other
**Required Services
Brain Injury Association of America SS 95 January
2003
Independence Plus, cont.
• Target Groups: NEW…………….
Brain Injury (Acquired)
Brain Injury (Trauma)
Brain Injury Association of America SS 96 January
2003
OPPORTUNITY IS MISSED BY
MOST PEOPLE BECAUSE IT IS
DRESSED IN OVERALLS AND
LOOKS LIKE WORK
Thomas Edison
Brain Injury Association of America SS 97 January
2003
Belonging
be-long, v. 1: to feel and be a part of …i.e. of a community, a workplace, a neighborhood or school 2: to enjoy a sense of contribution, value, self-worth 3: to truly believe one is a natural and equal part of the whole 4: comfortable, safe, cared for, welcome.
Brain Injury Association of America SS 98 January
2003
A world where all preventable
brain injuries are prevented, all
unpreventable brain injuries are minimized and all individuals who
have experienced brain injury maximize
their quality of life
Vision Statement