1. Traumatic Brain Injury Educational Series Presented by Telehealth Idaho Balancing Budgets, Advancing Outcomes: The Public/Private Partnership in Brain Injury Service Delivery Susan H. Connors www.nashia.org

2. NASHIA’s Mission To assist state government in promoting partnerships and building systems to meet the needs of individuals with brain injury and their families.

3. NASHIA Activities Information - Fact Sheets, National Directory, News Bulletins, JHTR Articles Education - Annual Meeting, Web Casts, Speakers’ Bureau Communication - Task Forces, Web Site, Exhibiting & Outreach Collective Representation - Congress, Federal Agencies, National Organizations

4.  5.3 million Americans with TBI disability 1.5 million/yr injured 1 million/yr seek emergency treatment 230,000/yr hospitalized 50,000/yr die 80,000/yr result in permanent disability CDC figures as of Jan 2001 TBI Incidence & Prevalence

5. 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)

6. Key Federal Policies 1935 - Social Security Act 1954 - Vocational Rehabilitation Act 1975 - Education for All Handicapped Children Act (Individuals with Disabilities Education Act) 1975 - Developmental Disabilities Assistance and Bill of Rights Act 1981 - Omnibus Budget Reconciliation Act 1990 - Americans with Disabilities Act 1999 - Ticket to Work and Work Incentives Improvement Act

7. TBI Act “…to provide for the conduct of expanded studies and the establishment of innovative programs with respect to traumatic brain injury and for other purposes.” TBI Act of 1996 (PL 104-166) TBI Act Amendments (Title XIII of Children’s Health Act of 2000, PL 106-310)

8. NASHIA’s Study Definitions Data Collection Lead Agencies Advisory Councils Funding Streams Services & Supports Collaboration 93 Questions on State Government Brain Injury Policies, Funding & Services

9. Systems of Care Prevention RESEARCH Traum a Pre- Hospital, Emergency Medical Services Emergency Department Acute Care Inpatient Rehabilitation COMMUNITY Out Patient Rehab Education Family Support Services Housing Vocational Training/Employment Long Term Services and Supports Physicians CASE MANAGEMENT/ SERVICE COORDINATION

10. Definitions TBIABIBoth

11. Lead Agencies Functions – Plan, Administer Programs, Manage Funds, Collaborate, Support Council Clusters in –Health (20 states) –Developmental Disabilities (6) –Rehabilitation (6) –Mental Health (5) –Human Services (5) 21 by Statute; 3 by Executive Order

12. Advisory Boards/Councils 47 of 51 States have advisory councils 41 of 47 have staff 20 in statute, 6 by exec order 13 report to governor or legislature Board size ranges 9-54 people; avg 20-25 40% consumer; 35% state agency employees 36 have chairpersons (majority are elected)

13. Advisory Council Functions Involved in planning, education, systems coordination, rehab & long-term services, prevention, and advise on funding Produce assessment, action plan, annual reports, legislative recommendations, info brochures

14. Services/Supports Eligibility Requirements –Injury Severity –Age –Asset/Income Limitations Parameters –Scope –Duration –Frequency –Annual & Lifetime Caps

15. Services/Supports Assessment/Evaluation – 46 states Behavioral Programs/Services – 41 states Case Management/Svc Coord – 46 states Community/Family Education – 33 states Housing Subsidies – 13 states Long-term Residential Services – 35 states Pre-vocational Services – 35 states Respite – 45 states Supported Employment – 37 states Substance Abuse Services – 33 states Therapy, Cognitive – 33 states Transportation – 45 states Vocational Services – 16 states Other Services – 23 states

16. Funding Mechanisms State Medicaid Plan – 51 states Federal Block Grants – 51 states Medicaid Waivers – 47 states TBI Medicaid Waiver – 25 states Trust Fund – 18 states General Revenue – 22 states Special Revenue – 4 states

17. Medicaid Waivers 1981 Omnibus Budget Reconciliation Act Lead to creation of 1915(c) – Home and Community Based Services HCBS Waivers serving individuals with brain injury: Developmental Disabilities – 31 States Aging & Disabled – 25 States Physical Disabilities – 12 States Elderly – 10 States

18. TBI HCBS Waivers

19. TBI HCBS Waiver Services Assessment Behavioral Programs Case Management Companion/Homemaker Services Day Services Durable Medical Equipment Environmental Modifications Life Skills Training Personal Care Attendants Substance Abuse Services Therapies Transportation Vocational Some Pay For: Residential Respite Pre-Vocational

20. Trust Funds Legislation to create dedicated funding Usually from fees, fines, or surcharges Requires agency administration and advisory council oversight Often rules on eligibility, scope, amount, and duration of services; including caps Can provide menu of services designed to fill gaps 18 States; 8 serving TBI+ (usually ABI or SCI) $3 million average fund size

21. Trust Funds

22. Trust Fund Services Environmental Mods – 9 Assistive Technology – 11 Community/Family Education – 11 Cognitive Therapy – 11 Occupational Therapy – 11 Physical Therapy – 11 Case Management – 10 Assessment/Evaluation – 10 Speech Therapy – 10 Day Services (Social Model) – 9 Ind Living Skills – 9 Behavioral Programs – 8 Spec Med Equip – 9 Personal Care – 8 Recreation – 8 Respite – 8 Support Groups – 8 Vehicle Modifications – 8

23. General & Special Revenue GeneralSpecialBoth

24. General & Special Rev Uses Services – 19 states Policy/Planning – 7 states Prevention – 3 states Registry – 2 states Research – 1 state Other – 12 states

25. Funding Combinations

26. Combinations Key WaiverWaiver, TBI Waiver & Appropriation Waiver, TBI Waiver & Trust Fund Waiver & TBI Waiver Waiver & Appropriation Waiver & Trust Fund Waiver, TBI, Appropriation & Trust Fund Waiver, Appropriation & Trust Fund Appropriation & Trust Fund

27. Lessons Learned “Data drives policy.” Allan Bergman, BIA of America “Policy drives funding.” Betty Hastings, MCHB “Advocates Drive The System.” “Funding drives services.” NASHIA members

28. Thanks! Susan H. Connors Executive Director National Association of State Head Injury Administrators 4733 Bethesda Ave., Suite 330 Bethesda, MD 20814 301-320-4331 shconnors@nashia.org