Susan H. Connors www.nashia.org

1. Traumatic Brain Injury Educational SeriesPresented by Telehealth IdahoBalancing Budgets, Advancing Outcomes: The Public/Private Partnership in Brain Injury Service Delivery Susan H. Connorswww.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. TBI Incidence & Prevalence • 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 • 5.3 million Americans with TBI disability

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

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

9. CASEMANAGEMENT/ SERVICECOORDINATION Prevention Emergency Department COMMUNITY Out Patient Rehab Education Family Support Services Housing Vocational Training/Employment Long Term Services and Supports Trauma Pre- Hospital, Emergency Medical Services Acute Care Physicians Inpatient Rehabilitation RESEARCH Systems of Care

10. Definitions TBI ABI Both

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

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

23. General & Special Revenue General Special Both

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 Waiver Waiver, TBI Waiver & Appropriation Waiver & TBI Waiver Waiver, TBI Waiver & Trust Fund Waiver & Appropriation Waiver, Appropriation & Trust Fund Waiver, TBI, Appropriation & Trust Fund Waiver & Trust Fund Appropriation & Trust Fund

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

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