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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. NASHIA’s Mission.

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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

nashia s mission
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.

nashia activities
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
tbi incidence prevalence
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
gao report
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
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
tbi act
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.”
nashia s study
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
systems of care

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
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Definitions

TBI

ABI

Both

lead agencies
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
advisory boards councils
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)
advisory council functions
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
services supports
Services/Supports
  • Eligibility Requirements
    • Injury Severity
    • Age
    • Asset/Income Limitations
  • Parameters
    • Scope
    • Duration
    • Frequency
    • Annual & Lifetime Caps
services supports1
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
funding mechanisms
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
medicaid waivers
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
tbi hcbs waiver services
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
trust funds
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
trust fund services
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

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General & Special Revenue

General

Special

Both

general special rev uses
General & Special Rev Uses
  • Services – 19 states
  • Policy/Planning – 7 states
  • Prevention – 3 states
  • Registry – 2 states
  • Research – 1 state
  • Other – 12 states
combinations key
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

lessons learned
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.”

thanks
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