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

Brain Injury Association of America SS 1 January 2003

TBI In The 21st Century:

Challenges and Opportunities

A presentation for:

ISU-Inst. of Rural Health

February 6, 2003

Allan I BergmanPresident/CEO

www.biausa.org


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


Organizational Histories (cont.)

• 1980 – National Head Injury Foundation

2001 renamed as the

Brain Injury Association

Of America


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



• 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



• 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



• 1996: Traumatic Brain Injury Act

• 2000: Traumatic Brain Injury Act Amendments

• 2001: Congressional Brain Injury Task Force

• Is your Congressperson a Member?


To create a better future through

brain injury prevention,

research, education

and advocacy.

Mission Statement


Web Sitewww.biausa.org

• Public Policy Corner

• And

• Legislative Action Center

Brain Injury Association of America SS 10 January

2003

www.biausa.org412,000 unique visitors in

2001

Improved and Expanded Site September 2002


2003

Family HelplineOver 17,000 calls in 2002

Se Habla Espanol


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.


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.


2003

Consequences Of Brain InjuriesCognitive 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


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


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


2003


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


2003

Public Perceptions of Traumatic Brain Injuries

Harris Poll

May 18-June 4, 2000


2003

Comparison of Annual IncidenceA 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


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.


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


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)


2003

TBI Rates By Age And Cause14 States, 1995-96

Transport

Falls

Firearms


2003

TBI Percent By Cause14 States, 1995-96

Falls26%

Firearms8%

Other Assault9%

Transport45%

Other/Unknown 12%


2003

Children and TBI

• Traumatic Brain Injury is the Leading Cause of Death and Injury-Related

Disability Among Children and Young Adults.


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


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


2003

IDEA Definition of TBI, cont.

Or degenerative, or to brain injuries induced by birth trauma.”

34CFR300.7(c)(12)


2003

Students Ages 6-21

Total: 5,541,166

TBI: 12,933

Special Education Data 1998-1999


2003

July-September 2000

46 Respondents (43 States and three Non-State jurisdictions)

OSEP “Forum” Survey of 53 State Education Agencies


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.)


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.)


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


2003

Brain Injury Association, Inc.

DISABILITY POLICY

FOR THE

NEW MILLENIUM


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


2003

NIH Consensus Development Conference, October 1998

Rehabilitation of Persons with

Traumatic Brain Injury


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.


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.


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.


2003


• 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


2003


• 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.


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


2003

Assistive Technology and People with Cognitive Disabilities

• Brain Injury Association of America

• Moss Rehabilitation

• Temple University

• University of Akron

• Spaulding Rehabilitation


2003

NCMRR Funded TBIClinical Trials Network (8

sites)


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


2003

Analysis of the TBI StateDemonstration Grants

Delaware Oregon

Georgia South Carolina

Illinois Texas

Iowa West Virginia

Mississippi Wisconsin

Oklahoma

John Corrigan, Ph.D.


2003

I. Accessibility

Can a person identify and utilize a service(assuming it is available)?

• There needs to be easy access toinformation about needs and resources.

• Arbitrary barriers are created by servicesystem eligibility criteria.

• Some sub-populations more readily fall


2003

I. Accessibility, cont.

through the gap in the service system.

• Services are not coordinated.


2003

II. AvailabilityWhat needed services do not exist?

• Funding is a major factor in limiting services.

• Rural communities have unique problemsof service availability.

• Lack of transportation limits availability.• Health insurance does not adequately

provide for needed services.


2003

II. Availability, cont.

• Treatment for behavioral health needs isoften difficult to obtain.

• Therapies for neurobehavior problems aregenerally insufficient.

• Appropriate and affordable housing islimited.

• Medicaid waivers do not exist or are toolimited in scope.


2003

II. Availability, cont.

• Children have special needs that are not

being met.

• Services are not available for the long term

needs of consumers.


2003

III. Appropriateness

Are existing resources the right ones for theneeds of the individual?

• Professionals in most service delivery systems lack knowledge and training to serve this population.

• There is dissatisfaction with acuterehabilitation services.


2003

III. Appropriateness, cont.

• There is dissatisfaction with employment-

related services.

• The unique needs of this population

contribute to its needs not being met.


2003

IV. Acceptability

Does the service enhance the self-actualization of the person using it?

• The individual’s need for self-determinationis often not recognized by service providers.

• Families need more training and educationabout the unique aspects of their role.


2003


2003

Self Determination 2001

• People With Brain Injury Are

“Speaking Out”

About Quality in Services

National Center on Outcomes Resources

(410) 583-0060

[email protected]


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.”


2003


2003

Traumatic Brain Injury Act 2000P.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


2003

Traumatic Brain Injury Act2000 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


2003


P.L. 106 – 310• HRSA State Grant Authority Revised and

Expanded:- No state match requirement- Continuation grants beyond planning

and implementation grants


2003



Expanded:- New grants focus:State Capacity Building –

- Educate consumers and families- Train professionals


2003



Expanded: - State Capacity Building (continued):

- Develop/improve case management/service coordination

- Develop best practices- Improve data sets- Develop capacity within targeted

communities


2003



Expanded: - Community Services and Supports:

- Timely Access- Full participation by individuals with TBI

& families in decisions- Includes children


2003



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


2003



Expanded: - Community Services and Supports (continued):

- Develop individual and family service coordination or case management

systems- Other needs as identified by advisory

board


2003


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


2003


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.


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


2003


• 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


2003


• HRSA Protection & Advocacy Services

• 2002 - $1,500,000

• 2003 Request - $5,000,000


2003


• 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


2003

Congressional Brain Injury Task Force

• Co-Chairs: James Greenwood (R-PA) and

Bill Pascrell (D-NJ)

• Founded April 2001

• 61 Members Today


2003

Americans With

Disabilities Act


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.


2003

Major Life Activities

• Caring for oneself

• Performing manual tasks

• Walking

• Seeing

• Hearing

• Speaking

• Breathing

• Learning

• Working


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


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.”


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


2003

Medicaid Expenditures for Long-Term Care Services 1989-2001(in thousands of dollars)

1989 2001 ACRG 1989-2001

Personal Care 1,656,998 5,254,198 10.1%

HCBS Waiver 943,300 14,382,573 25.5%

Home Health 656,553 2,572,840 12.1%

ICF 8,902,074

SNF 6,766,109 42,727,565 8.7%

ICF-MR 6,628,208 10,351,051 3.8%

Total Long-Term Care

25,553,242 75,288,226 9.4%

Total Medicaid 58,642,495 214,585,884 11.4%


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-1997Total: 1,608,700


2003

MR/DD74.7%

TBI0.5%

Tech. Dep.0.5%

MI0.2%

Aged2.1%

A/D19.0%

AIDS/ARC0.5%

PD2.5%

FFY 2000 Medicaid HCBS Waiver Expenditures by Target Population

Source: HFCA 64 data, Office of State Agency Financial Management


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


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


2003

Waivers-People with B.I.-2001

• Vermont $ 2,151,635

• Wisconsin $14,397,750

TOTAL $80,794,908


2003

A Successful Community Life

• Housing

• Health Care and Appropriate Medical Services

• Mental Health/Behavioral Health Services

• Education/Higher Education

• Employment/Supported Employment

• Transportation


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


2003


2003

Medical “Model”

VS

Psychosocial “Model”


2003

Brain Injury Association, Inc.

FROM A CONTINUUM OF

CARE TO AN ARRAY OF

INDIVIDUAL AND FAMILY

SUPPORTS


2003

MedicaidIndependence Plus

May 9, 2002A Demonstration Program for Family or

Individual Directed Community Services

• Person-Centered Planning;

• Individual Budgets;

• Group Living No More Than 4 Persons;


2003

Independence Plus (cont.)

• Services Menu:

• Case Management

• Homemaker Services

• Home Health Aide Services

• Personal Care Services

• Adult Day Health Services


2003

Independence Plus, cont.

• Habilitation Services

• Respite Services

• Supports Brokerage Services/Functions*

• Fiscal/Employer Agent Services/Functions*

• Other

**Required Services


2003

Independence Plus, cont.

• Target Groups: NEW…………….

Brain Injury (Acquired)

Brain Injury (Trauma)


2003

OPPORTUNITY IS MISSED BY

MOST PEOPLE BECAUSE IT IS

DRESSED IN OVERALLS AND

LOOKS LIKE WORK

Thomas Edison


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.


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

Documents

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