1. Brain Injury Association of America SS 1 January 2003 TBI In The 21 st Century: Challenges and Opportunities A presentation for: ISU-Inst. of Rural Health February 6, 2003 Allan I Bergman President/CEO www.biausa.org

2. 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

3. 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

4. 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

5. 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

6. 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

7. 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?

8. Brain Injury Association of America SS 8 January 2003 To create a better future through brain injury prevention, research, education and advocacy. Mission Statement

9. Brain Injury Association of America SS 9 January 2003 Web Site www.biausa.org Public Policy Corner And Legislative Action Center

10. Brain Injury Association of America SS 10 January 2003 www.biausa.org www.biausa.org 412,000 unique visitors in 2001 Improved and Expanded Site September 2002

11. Brain Injury Association of America SS 11 January 2003 Family Helpline Over 17,000 calls in 2002 Se Habla Espanol

12. 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.

13. 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.

14. Brain Injury Association of America SS 14 January 2003 Consequences Of Brain Injuries Cognitive 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

15. 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

16. 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

17. Brain Injury Association of America SS 17 January 2003

18. 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

19. Brain Injury Association of America SS 19 January 2003 Public Perceptions of Traumatic Brain Injuries Harris Poll May 18-June 4, 2000

20. Brain Injury Association of America SS 20 January 2003 Comparison of Annual Incidence A 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

21. 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.

22. 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

23. 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)

24. Brain Injury Association of America SS 24 January 2003 TBI Rates By Age And Cause 14 States, 1995-96 Transport Falls Firearms

25. Brain Injury Association of America SS 25 January 2003 TBI Percent By Cause 14 States, 1995-96 Falls 26% Firearms 8% Other Assault 9% Transport 45% Other/Unknown 12%

26. 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.

27. 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

28. 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

29. 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)

30. 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

31. 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

32. 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.)

33. 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.)

34. 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

35. Brain Injury Association of America SS 35 January 2003 Brain Injury Association, Inc. DISABILITY POLICY FOR THE NEW MILLENIUM

36. 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

37. Brain Injury Association of America SS 37 January 2003 NIH Consensus Development Conference, October 1998 Rehabilitation of Persons with Traumatic Brain Injury

38. 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.

39. 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.

40. 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.

41. 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

42. 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.

43. 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

44. 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

45. Brain Injury Association of America SS 45 January 2003 NCMRR Funded TBI Clinical Trials Network (8 sites)

46. 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

47. Brain Injury Association of America SS 47 January 2003 Analysis of the TBI State Demonstration Grants DelawareOregon GeorgiaSouth Carolina IllinoisTexas IowaWest Virginia MississippiWisconsin Oklahoma John Corrigan, Ph.D.

48. 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 to information about needs and resources. Arbitrary barriers are created by service system eligibility criteria. Some sub-populations more readily fall

49. Brain Injury Association of America SS 49 January 2003 I. Accessibility, cont. through the gap in the service system. Services are not coordinated.

50. Brain Injury Association of America SS 50 January 2003 II. Availability What needed services do not exist? Funding is a major factor in limiting services. Rural communities have unique problems of service availability. Lack of transportation limits availability. Health insurance does not adequately provide for needed services.

51. Brain Injury Association of America SS 51 January 2003 II. Availability, cont. Treatment for behavioral health needs is often difficult to obtain. Therapies for neurobehavior problems are generally insufficient. Appropriate and affordable housing is limited. Medicaid waivers do not exist or are too limited in scope.

52. 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.

53. Brain Injury Association of America SS 53 January 2003 III. Appropriateness Are existing resources the right ones for the needs of the individual? Professionals in most service delivery systems lack knowledge and training to serve this population. There is dissatisfaction with acute rehabilitation services.

54. 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.

55. 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-determination is often not recognized by service providers. Families need more training and education about the unique aspects of their role.

56. Brain Injury Association of America SS 56 January 2003

57. 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 Info@thecouncil.org

58. 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.”

59. Brain Injury Association of America SS 59 January 2003

60. Brain Injury Association of America SS 60 January 2003 Traumatic Brain Injury Act 2000 P.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

61. Brain Injury Association of America SS 61 January 2003 Traumatic Brain Injury Act 2000 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

62. Brain Injury Association of America SS 62 January 2003 Traumatic Brain Injury Act 2000 Reauthorization P.L. 106 – 310 HRSA State Grant Authority Revised and Expanded: - No state match requirement - Continuation grants beyond planning and implementation grants

63. Brain Injury Association of America SS 63 January 2003 Traumatic Brain Injury Act 2000 Reauthorization P.L. 106 – 310 HRSA State Grant Authority Revised and Expanded: - New grants focus: State Capacity Building – - Educate consumers and families - Train professionals

64. Brain Injury Association of America SS 64 January 2003 Traumatic Brain Injury Act 2000 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

65. Brain Injury Association of America SS 65 January 2003 Traumatic Brain Injury Act 2000 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

66. Brain Injury Association of America SS 66 January 2003 Traumatic Brain Injury Act 2000 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

67. Brain Injury Association of America SS 67 January 2003 Traumatic Brain Injury Act 2000 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

68. Brain Injury Association of America SS 68 January 2003 Traumatic Brain Injury Act 2000 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

69. Brain Injury Association of America SS 69 January 2003 Traumatic Brain Injury Act 2000 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.

70. 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

71. 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

72. 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

73. 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

74. 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

75. Brain Injury Association of America SS 75 January 2003 Americans With Disabilities Act

76. 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.

77. 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

78. 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

79. 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.”

80. 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

81. Brain Injury Association of America SS 81 January 2003 Medicaid Expenditures for Long-Term Care Services 1989-2001 (in thousands of dollars) 19892001ACRG 1989-2001 Personal Care1,656,9985,254,19810.1% HCBS Waiver 943,30014,382,57325.5% Home Health 656,5532,572,84012.1% ICF8,902,074 SNF6,766,10942,727,5658.7% ICF-MR6,628,20810,351,0513.8% Total Long-Term Care 25,553,24275,288,226 9.4% Total Medicaid58,642,495214,585,88411.4%

82. 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-1997 Total: 1,608,700

83. Brain Injury Association of America SS 83 January 2003 MR/DD 74.7% TBI 0.5% Tech. Dep. 0.5% MI 0.2% Aged 2.1% A/D 19.0% AIDS/ARC 0.5% PD 2.5% FFY 2000 Medicaid HCBS Waiver Expenditures by Target Population Source: HFCA 64 data, Office of State Agency Financial Management

84. 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

85. 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

86. 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

87. 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

88. 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

89. Brain Injury Association of America SS 89 January 2003

90. Brain Injury Association of America SS 90 January 2003 Medical “Model” VS Psychosocial “Model ”

91. 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

92. Brain Injury Association of America SS 92 January 2003 Medicaid Independence Plus May 9, 2002 A Demonstration Program for Family or Individual Directed Community Services Person-Centered Planning; Individual Budgets; Group Living No More Than 4 Persons;

93. 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

94. 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

95. Brain Injury Association of America SS 95 January 2003 Independence Plus, cont. Target Groups: NEW……………. Brain Injury (Acquired) Brain Injury (Trauma)

96. 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

97. 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.

98. 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