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

To assist state government in promoting partnerships and building systems to

meet the needs of individuals with brain injury

and their families.

NASHIA ActivitiesInformation - 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

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

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

1935 - Social Security Act1954 - Vocational Rehabilitation Act1975 - Education for All Handicapped

Children Act (Individuals with Disabilities Education Act)

1975 - Developmental Disabilities Assistance and Bill of Rights Act

1981 - Omnibus Budget Reconciliation Act1990 - Americans with Disabilities Act1999 - Ticket to Work and Work Incentives

Improvement Act

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)

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

Systems of Care

Prevention

RESEARCH

Traum

a

Pre-Hospital,

Emergency Medical Services

Emergency Department

Acute Care

InpatientRehabilitation

COMMUNITY

Out Patient Rehab

Education

Family Support Services

Housing

Vocational Training/Employment

Long Term Services and Supports

Physicians

CASE MANAGEMENT/SERVICE COORDINATION

Definitions

TBI ABI Both

Lead AgenciesFunctions – 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/Councils47 of 51 States have advisory councils41 of 47 have staff 20 in statute, 6 by exec order13 report to governor or legislatureBoard size ranges 9-54 people; avg 20-2540% consumer; 35% state agency

employees 36 have chairpersons (majority are elected)

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/SupportsEligibility Requirements

– Injury Severity– Age– Asset/Income Limitations

Parameters– Scope– Duration– Frequency– Annual & Lifetime Caps

Services/SupportsAssessment/Evaluation – 46 statesBehavioral Programs/Services – 41 statesCase Management/Svc Coord – 46 statesCommunity/Family Education – 33 statesHousing Subsidies – 13 statesLong-term Residential Services – 35 statesPre-vocational Services – 35 statesRespite – 45 statesSupported Employment – 37 statesSubstance Abuse Services – 33 statesTherapy, Cognitive – 33 statesTransportation – 45 statesVocational Services – 16 statesOther Services – 23 states

Funding Mechanisms

State Medicaid Plan – 51 statesFederal Block Grants – 51 statesMedicaid Waivers – 47 statesTBI Medicaid Waiver – 25 statesTrust Fund – 18 statesGeneral Revenue – 22 statesSpecial Revenue – 4 states

Medicaid Waivers1981 Omnibus Budget Reconciliation ActLead to creation of 1915(c) – Home and

Community Based ServicesHCBS Waivers serving individuals with

brain injury:• Developmental Disabilities – 31 States • Aging & Disabled – 25 States• Physical Disabilities – 12 States • Elderly – 10 States

TBI HCBS Waivers

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

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 Funds

Trust Fund ServicesEnvironmental Mods – 9Assistive Technology –

11 Community/Family Education – 11

Cognitive Therapy – 11

Occupational Therapy – 11Physical 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 – 8Vehicle Modifications – 8

General & Special Revenue

General

Special

Both

General & Special Rev Uses

Services – 19 statesPolicy/Planning – 7 statesPrevention – 3 statesRegistry – 2 statesResearch – 1 stateOther – 12 states

Funding Combinations

Combinations Key

Waiver Waiver, TBI Waiver & Appropriation

Waiver, TBI Waiver & Trust FundWaiver & TBI WaiverWaiver & AppropriationWaiver & Trust Fund

Waiver, TBI, Appropriation & Trust Fund

Waiver, Appropriation & Trust Fund

Appropriation & Trust Fund

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

Thanks!

Susan H. ConnorsExecutive DirectorNational Association of State Head

Injury Administrators4733 Bethesda Ave., Suite 330Bethesda, MD 20814301-320-4331shconnors@nashia.org