Acknowledgements

This report is built on the efforts of many dedicated professionals, families and

persons with brain injury. Space prohibits naming them all, but we would like to express

gratitude to a few of the prominent contributors to the Indiana TBI Needs Assessment.

The Indiana TBI Advisory Committee: Odie Bracy, Ph.D. Neuroscience Center of Indianapolis

Suzann Byers, CRRN Southern Indiana Rehabilitation Hospital

Sue Collins, BS, RN Central Indiana Case Management Society

Stephanie Combs, MS Hook Rehabilitation Center

Representative William Crawford Indiana House of Representatives

Nancy Dayhoff, EdD IUPUI School of Nursing

Tom Doehrman, Esq. Conour-Doehrman

Donna Evans TBI Medicaid Waiver Program

Carlos Faustino, M.D. TBI Community Representative

Andrew Klatte Department of Mental Health

Sharon Knoth Indiana Department of Education/ Division of Special Education

Penny Lewis, BA, CSPI BIAI

Mary Locke, Ph.D. Green and Locke Associates

Karen May, RN, CRRN Brain Injury Association National Board of Directors

Cathy Nordholm, MS Indiana State Department of Health/ Maternal Child Health Services

Senator Robert Meeks Indiana State Senate

Carole Reynolds TBI Community Representative

Margaret Sak, OTR Memorial Regional Hospital of South Bend

Bill Schmitt HealthSouth Surgical Center

Robert Setree TBI Community Representative

Nancy Smith-Fague Indiana Family Social Services Administration/ Division of Disability Aging and Rehabilitation Services

Michael Turner, M.D. Indianapolis Neurosurgery Group

Jacqueline Wall, Ph.D. University of Indianapolis The BIAI Staff: Donna Jackson Executive Secretary

Betty Jackson Project Co-Coordinator

Frank VanArsdall Project Co-Coordinator

Kelsey Dunning Volunteer

Christy Dinkla Project Intern

Tom Mills Project Intern Town Meeting Panelists: David Haluda Indiana Department of Vocational Rehabilitation

Marie Reimers Central Indiana Council on Aging (CICOA)

Lonnie Douglas South Bend Commission on Human Rights

Ramona Miller Area 14 Agency on Aging and Community Services (Lifespan Resources, Inc.)

Kevin Blevins Division of Aging and Rehabilitation Services

Mary Haas Brain Injury Association of Kentucky

Charlotte Steidom CICOA

Doug Bebee Indiana Department of Vocational Rehabilitation

Demaris Stewart Indiana Department Of Education

Donna White IndyGo

Rama Rothe Center for Comprehensive Services

Nancy Ford-Winters Advocate

Other Assistance: Ellen Mathia Director for University Relations, The University of Indianapolis Special Thanks to:

Jeffery Kreutzer, Ph.D.

Allen Heinenmann, Ph.D

Linda Moore

Suzann Byers

Nancy Palka

Sue Behagg

Norman Stephens

Nancy Howe

Indiana’s Problem

Brain injury is a leading cause of death and disability to Indiana’s children and teens. It is

also a leading cause of disability for Hoosiers in the prime working years— people with families

who depend on them.

The entire scope of the problem cannot be known. Indiana,

unlike other states, has no plan for tracking the numbers of

brain injuries that occur within its borders. What numbers are

known are from hospital admission records that the Indiana

Hospital and Health Association maintains. The admission

records, while not presenting the entire story, show that

Hoosiers are afflicted with brain injuries at epidemic levels.

Despite the numbers, many people, including medical

professionals, do not understand the long-term issues that confront those who live with brain

injury. Many survivors are unable to return to work without assistance. Family members often

leave, or cut back on, their work to care for injured family members.

Indiana has no public policy for serving persons with brain injury and their families. Existing

services are fragmented, without any unifying plan to follow. Have a well-defined unified plan is

critical when you consider that brain injured people often lose executive function skills that assist

an individual in piecing such services together. In addition, brain injury is a physical disability

of the brain that leads to cognitive, behavioral and/or emotional issues, which often do not fit the

eligibility criteria for the limited services available in Indiana.

In 1999, the Indiana State Department of Health’s Maternal and Child Health Service

(ISDH/MCHS) applied for a grant through the Health Resources and Services Administration.

This grant provided monies to conduct a Needs Assessment in Indiana as well as other items.

ISDH/MCHS contracted with the Brain Injury Association of Indiana (BIAI) to conduct the

Needs Assessment to identify the unmet needs of persons with brain injury and their families.

BIAI with help from the Indiana Traumatic Brain Injury Advisory Committee and rehabilitation

hospitals throughout the state, assessed these needs at the levels of consumers, professionals and

service providers. The goal of the Assessment was to develop a plan of action to make the

“I personally think that for the last six or seven years Indiana has been in the Dark Ages, as far as TBI is concerned.”

— Robert Meeks, Indiana State Senator, R-Kendallville, at the 4/25/00 town meeting to discuss service gaps for Hoosiers with brain injuries.

2

A disruption of brain functioning caused by external force (e.g. through motor vehicle crash or fall), oxygen deprivation (e.g. through heart attack or near drowning), infectious disease (e.g. meningitis), brain tumor, cerebral disruption (e.g. aneurysm), surgery, toxic exposure, and other neurological disorders, which mainly affect the central nervous system.

network of services accessible and effective for those who need them. The effectiveness of a

service is measured by how well it helps people return to their families and communities as

productive members.

With no warning brain injury transforms a productive individual into a consumer of public

resources. Restoring quality of life to persons with brain injury benefits the larger community

whether the results are a return to full-time employment or simply increased independence

within the community.

Economists call this “opportunity cost.” That is, the price on something is not true value; you

must also figure in the costs of the alternatives. What will be the lost opportunities? Services for

people with brain injury and their families do have costs but, in the long run, unmet needs cost

the community more.

Brain Injury-- What Is It?

The terms Traumatic Brain Injury (TBI) and Acquired Brain Injury (ABI) are often confused;

for most purposes they may be used interchangeably. The New Hampshire Department of Health

and Human Services uses a practical definition that covers both:1

In short, any injury to the brain that is not present at birth or that is not the result of some

form of natural breakdown (e.g. Alzheimer’s disease) is considered brain injury. To those who

live with brain injury, however, the labels are only academic because the effects and needs are

the same.

Possible Consequences of brain injury:2

A brain injury may cause mild, moderate or severe problems in one or more areas, including

cognition (see the definition below) as well as behavioral, physical, and emotional abilities.

• Cognitive effects such as: short term memory loss; inability to learn new information;

impaired ability to organize or plan; impaired judgment; unable to do more than one

thing at a time; forgetfulness; reduced attention span.

3

“Cognition is a complex collection of mental skills that include attention, perception, comprehension, learning, remembering, problem solving, reasoning…These mental attributes allow us to understand our world and to function within it. After a brain injury a person typically loses one or more of these skills. Cognitive rehabilitation is the art and science of restoring these mental processes to the brain.”

— Parente and Herrmann, 1996, Retraining Cognition: Techniques and Applications. Aspen Publishers, Inc. p. 1

• Behavioral effects

such as: social

inappropriateness,

impulsivity, agitation and

aggression, fabrication.

• Physical effects such as: seizures,

muscle spasms, vision problems,

speech impairments, headaches or

migraines, fatigue, increased need for

sleep, balance problems.

• Emotional effects such as: loss of initiative, difficulty in completing tasks without

reminders, increased anxiety, depression and mood swings, impulsive behavior, difficulty

in seeing how behaviors can affect others, denial of deficits.

Just how big is the problem for Indiana?

To the Center for Disease Control (CDC), brain injury is “the silent epidemic.” It is the

fastest growing disability in America. Nationally, the CDC ranks TBI as a larger problem than

AIDS, Breast Cancer and Multiple Sclerosis combined.3 The CDC estimates that 5.3 million

Americans are now living with a TBI related disability (more than the population of Wisconsin).

The most complete data available for Hoosiers comes from the Indiana Hospital and Health

Association (IHHA), which reports admissions to Indiana hospitals for brain injuries in 1997.

This report shows 8,818 admissions of Hoosiers for brain injury in Indiana during 1997 —

roughly the population of Switzerland County.4 This does not include people who were treated

and released in emergency rooms, clinics, or doctor offices. Exact numbers are impossible to

collect without a Trauma Registry being established in Indiana.

4

We do know that, in Indiana, the incidence of brain injury dwarfs those of better-known

medical problems such as HIV/ AIDS, Hepatitis, and most forms of Cancer. For a better

perspective see table 1.

Nationwide, TBI is one of the leading causes of death and disability to children and

young adults. The IHHA admissions numbers hint at this impact on young Hoosiers:

54 percent are 44 years old or younger

45 percent are 34 or younger

23 percent are 18 or younger

12 percent are 7 or younger

The largest group is for males 19 to 34— they alone make 16 percent of all hospital admissions for TBI

Since brain injury has its greatest effect

on the core of our society, Indiana has

obvious economic and social interests in

Hoosier Medical Problem (Most recent data available for each)

Known Incidence

Incidence per 100,000 Hoosiers

Brain Injury (1997)5 8818 149.26 Lung & Bronchial Cancer (1995)6 3896 59.2 Breast Cancer (1995)5 3711 55.3 Prostrate Cancer (1995)5 2760 41.6 All Skin Cancers (1995)5 678 10.0 AIDS and HIV (March 2000)7 548 9.38 Leukemia (1995)5 513 7.8 Hepatitis A, B & C (1998)8 260 4.4 Table 1

Indiana Brain Injuries by age and sex 1997

7-12 F1.34%

13-18 M7.99%

0-6 F2.97%

45-54 F2.92%

45-54 M5.95%

35-44 F3.93%

55-64 F2.33%

55-64 M3.83%

0-6 M4.19%

19-34 M15.54%

35-44 M8.66%

7-12 M2.97%

13-18 F3.80%

19-34 F6.36%

65+ M12.72%

65+ F14.50%

5

“Rarely are the Consequences limited to one set of symptoms, clearly delineated impairments, or a disability that affects only a part of a person’s life, Rather the consequences of traumatic brain injury often influence human functions along a continuum from altered physiological functions of cells through neurological and psychological impairments, to medical problems and disabilities…”

—The National Institute of Health, Draft Consensus Statement on TBI, 1999

seeing that they get the services needed to rejoin their communities.

Why haven’t we heard more about it?

Why is brain injury a silent epidemic? There are many reasons, but the main reason is the

rapid increase of incidence in recent years has caught society off-guard. Before the 1980’s, most

people with severe brain injuries simply died. With medical advances— emergency and trauma

care, surgical procedures and technology— many more now survive. Even medical professionals

are still struggling to grasp the implications of survival and quality of life issues.

With mild to moderate brain injury the question is not so much about heroic life saving

measures as it is recognizing cause and effect. A common problem grows from people shrugging

off a concussion. It is difficult to understand the problems that may arise following a concussion

if you are injured and then develop problems without ever understanding why. Someone’s family

may notice that “He just hasn’t been the same since he was knocked in the head,” without

realizing that anything can be done about it.

For many years brain injuries have been misdiagnosed. Because they often have behavioral

or cognitive symptoms they have often been treated as mental or developmental disabilities. This

has proven to be ineffective, at best.

There is also a question of activism: Brain injury stands in stark contrast to other disabilities

and medical problems that have advocates to push

for support and awareness. Most people with

severe brain injury, and their families, lack the

time, energy and resources to make a cause out of

their problem. Many people with mild brain

injury, on the other hand, would rather that no one

even know about it— they do not want to be

stigmatized. People with brain injuries, regardless

of the severity, frequently lose their ability to

organize. Lacking a voice, they are ignored in

public policy.

6

“Results of recent studies tell us that untreated concussions, especially if it is not the first one, may have ramifications which could last a lifetime.”

—Dr. David Harsha, sports medicine primary care physician at St. Vincent Hospital. The Indianapolis Star, 11/26/99

“I can be holding a cup of coffee. The cup is in my hand. I feel the cup. All of a sudden the cup is gone.”

—Lois, an Indianapolis woman describing her life after a double concussion.

What does it mean to live with brain injury?

The results of brain injury are different for each individual. Brain injury is not well defined,

unlike other disabilities such as Alzheimer’s, chronic mental illness, cancer or heart disease.

Since the human brain is extremely complex, the effects of any injury to it will depend on the

location and severity of the wound as well as the method and timeliness of the treatment.

A mild brain injury, or concussion, is defined by either loss of consciousness, loss of

memory (of events just before or after the injury), a

changed mental state (at the time of injury), or any

combination of these symptoms. Moderate injuries

can cause unconsciousness that lasts anywhere from

a few minutes to a few hours followed by days of

confusion. Severe injuries almost always cause

long-term unconsciousness or coma.9

People with mild injuries have a good chance for complete recovery. Usually they work past

their deficits within three months. For some, however, the damage leaves long-term disabilities.

Moderately injured people may struggle with their impairments for months, maybe permanently.

Those with severe injuries will likely have to deal with permanent disabilities, although they can

achieve significant improvements.10

At first glance many people with brain injury show no sign of disability. Not only can

appearances be deceiving, they can be obstacles as well. The U.S. General Accounting Office

(GAO) noted this in a February 1998 report to Congress:

“Adults with Traumatic Brain Injury who can walk, talk and look ‘normal’ are refused

services, even though they cannot maintain themselves in the community without help.

Cognitively impaired people frequently lack executive skills…have difficulty functioning

independently.”11

The GAO report says that these services, such as

reminders to pay bills or assistance in figuring out a bank

balance, are relatively low cost but essential to one’s ability to

live independently. Adults with brain injury, the report says,

often do not recognize their own limitations; they often have

7

“I have been incarcerated in a nursing home, that is right, I said incarcerated. I wish they had let me die… My life has been a living hell…”

— Ed, a severe TBI survivor at the Fort Wayne town meeting on service gaps, 6/08/00

normal intelligence, but are unable to apply learning from one environment to another.

“Without treatment,” the GAO warns, “individuals with problematic or unmanageable

behaviors are the most likely to become homeless, institutionalized . . .or imprisoned.”

Even a mild brain injury can impair cognitive and psychological functions enough to create

problems at work, according to Robert J. Fabiano and Julie Daugherty, of Michigan State

University.12 It can decrease job performance and cause frequent job changes.

“Efficient and effective rehabilitation is imperative,” they say, “for reducing the personal and

economic losses associated with mild traumatic brain injury.” With proper diagnosis and

treatment, they say, most people with mild brain injuries are able to restore their lives, stabilize

their families, and return to work.

Those recovering from severe brain injuries face the

toughest odds. Many have no chance to resume what we (or

they) would think of as “normal” lives. Some even grow to

hate medical professionals for making the effort to save

them. They, and their families, need to know that the

community supports their need to live as independently as

possible.

Needs and Services

While the effects of each brain injury are unique, many of the needs expressed are common.

Because of the uniqueness, however, it would be useless to prescribe a set of services for brain

injuries. People with brain injuries, and their families, require the ability to match the range of

services and supports to individual needs.

There are some basic issues that the state of Indiana can address to manage the concerns

presented by the epidemic numbers of these injuries:

A standard set of definitions for state agencies and service providers in Indiana need to be

developed. People can, and do, slip through the cracks of the system because we do not always

agree on what things mean. When it comes to questions of eligibility and accessibility everyone

needs to speak the same language. At other times people with brain injuries are denied

services— because definitions of disability, used in the eligibility criteria for agencies such as

8

“Once you’re scraped up off the pavement, you’re on your own… “

—Vicky, an Indianapolis woman with multiple brain injuries, referring to the availability of information to survivors of TBI 4/25/00

Medicaid, only acknowledge problems that either show physical effects or arise from neatly

categorized mental disabilities.

A Comprehensive Reporting and Tracking System for Brain Injuries: The proportions

of the public health concerns presented by brain injury are hard to estimate because the data is, at

best, sketchy. There is no accurate and comprehensive method for identifying and tracking

individuals with brain injuries from initial treatment through community re-integration. To set

effective policy Indiana will need to follow the lead of other states, such as Alaska and Arizona

in this regard.

A Single Point of Entry for Government Provided Services— regardless of which hospital

or medical setting provides treatment a single referral point

is needed for information, resources, and assistance with

accessing governmental assistance. This would enable

people to find what is available through one “lead agency.”

Currently, Indiana has no such “information warehouse” to

ease entry to the system of services and supports which may

apply to individuals with brain injury. The challenge of finding out what is available is

overwhelming and lack of direction effectively shuts families out of the very system that is

supposed to help.

Many service providers and state agencies lack understanding of the issues that surround

brain injury. This is a major obstacle between people and appropriate services. Think about it:

People with brain injuries are routinely referred to programs for the mentally or developmentally

disabled, and professionals in such programs often have little or no training in brain injury

issues. Such programs are often neither appropriate nor adequate to the needs presented by brain

injury.

The problem is that few of those who need to be knowledgeable about brain injury actually

are. On a quiz of basic facts about brain injury (part of the TBI needs assessment) professional

service providers scored an average of 64 percent. If we were grading, that would be a solid D. If

Indiana had a single point of entry in place, we would see much less of this misdirection. As

things stand, much time and money (not to mention qualities of life) are being wasted because

there is no signpost to point the way.

9

“The biggest problem that counselors have with TBI is that no case management services are available. As we know, with most TBI customers, usually the critical issues are lack of motivation, lack of organizational skills and behavioral issues…we just don’t have enough support to make sure that things are carried through.”

—Dave Haluda, Indiana Department of Vocational Rehabilitation, South Bend Area Supervisor

Case Management is especially

important for a group of people that often

loses organizational skills. They have a hard

time “navigating the system” to identify,

apply, and develop a service plan. Even for

those without injuries to cope with, it is still

often difficult to deal with a maze of

governmental, professional and corporate

bureaucracies. The disabilities associated

with brain injury are often life-long, but the needs that they present change over a person’s

lifetime. A case manager to assess, manage and coordinate the services to meet those needs

would be very cost effective.

This is a concern that has come up repeatedly in the public meetings on service gaps for

persons with brain injuries held statewide in the summer of 2000. In many cases families, who

are already in a state of crisis, do not know what is available or where to look for it. The GAO

Report to Congress says, “…people without an effective and knowledgeable advocate [will]

probably not receive services…”

A case manager could ease another concern—expressed by both survivors and service

providers—the effective spread of information about brain injury and it’s consequences. At the

town meetings, people frequently complained that they were given no preparation for the trials

that lay ahead of them.

Case management needs to begin at admission to a

healthcare facility or program and include information

and discharge planning services. Any brain injury is a

crisis situation. People in crisis, especially those in denial

or with cognitive difficulties, are not in a good position to

search for information, juggle alternatives, and map out

strategies.

Community Reentry: The effectiveness of any

service should be measured by the success of individuals

“I would like to see every ER give some sort of Brain Injury information to every patient diagnosed with a head injury. Had my family had more information, I might not still be having these problems after five years.”

—Laure, a survey respondent from Dearborn County 4/00

10

returning to the community as productive members. In

this regard, current Indiana public policy sets service

providers up for failure.

One such recipe for failure is the current policy of

allowing Medicaid to spend less money, per day, for

rehabilitative services within Indiana’s borders than it

will pay to send people to out of state facilities. Whatever

the intentions of this policy, it has the effect of either

causing services to be forfeited in order to keep families

together or negating the families role in rehabilitation by

providing services out-of-state. Even if rehabilitation is

successful, when the individual is ready to rejoin the community, those Hoosiers that are sent out

of state often cannot come back home because of the lack of services due to funding issues.

While Medicaid will reimburse between $350 and $550 per day for care and treatment of

individuals with brain injury in an out of state facility, it will only reimburse a third or less of

that amount per day within Indiana. This lower rate leaves precious few options for successful

rehabilitation and habilitation within Indiana. The only facilities affordable at this rate are

nursing homes. Few, if any, Hoosier nursing homes have the capabilities or training to meet the

needs of someone with a brain injury. At around $100 per day, few of them even want to try.

More importantly it is inappropriate placement for a 25-year-old to be placed long-term in a

nursing facility that generally treats

the geriatric population. Due to the

inappropriate nursing facility

placement, persons with brain

injury may become uncooperative,

even combative, with the staff. This

in turn can lead to “chemical

restraint” or expulsion from the

facility. Preparing someone to

rejoin the community is not a

viable option under current Indiana

“There is a difference between housing and rehabilitation. Why just put people in a nursing home? Why not help move them back into society and make them productive at some level? The State of Indiana has an obligation to provide this care in Indiana, not in Ohio, or Kentucky, or Illinois.”

—Indiana State Senator Robert Meeks, R-Kendallville

“We do not have a good mechanism in this state for appropriate respite care… qualified respite care, not just someone to come in and give them a break”

—Karen May, RN, CRRN

“We just don’t have a large provider base for TBI [respite care] … I do know that we need to do something in terms of training providers so that they will be well equipped to handle the TBI population.”

—Donna Evans, Director of Indiana Medicaid’s TBI Waiver Unit

“There would be those providers if the [Medicaid] rate were high enough… That is part of the problem. It’s not anywhere near as high as it is for out of state placement” —Senator Meeks

Dialog at the 4/25/00 Indianapolis town meeting.

11

standards.

Many Hoosier families opt out of this system by caring for the injured member at home, and

at their own expense. Of course, the average Hoosier family is not equipped to deal with the

needs of a member with brain injury either.

For a family to make the effort, someone has

to take on the role of caregiver, which usually

means sacrificing income.

This may seem to save the state money,

but the savings do not match the hidden costs.

Stress takes a toll on families. Loss of family

income and productivity, multiplied by

thousands, hampers the state economy. Individuals with brain injuries are still (usually)

unprepared to rejoin the community. In the long run everyone ends up short-changed.

In the short-term Medicaid does have an answer, although it is one with limited

opportunities. That answer is the TBI Medicaid Waiver program, which allows reimbursement

for services not normally, covered by Medicaid. Waiver services are intended for independent

living, to keep individuals from being institutionalized. Indiana’s TBI Waiver program addresses

long-term needs unlike those of other states, such as Kentucky and Texas, which provide

temporary “stopgap” assistance.

The problem with waivers is that there just are not enough to go around. The state legislature

has authorized 200 TBI Waivers, and Medicaid has interpreted this to mean only 200 individuals.

Medicaid is servicing 100 individuals this year. Next year 50 more will be added, and another 50

in 2002. Once an individual has been assigned a TBI Waiver, it cannot be reassigned to another

individual under any circumstances and is lost should the original recipient ever not qualify or

refuse services. The waiver is to serve a population that numbers in the thousands. Remember, a

number of people greater than the entire population of Switzerland County endure a new brain

injury every year.

The reason that Indiana’s Medicaid policy, and the structure of the Medicaid TBI Waiver are

so important is that Medicaid is one of the primary sources of funding for services. This

importance is compounded by the fact that private insurance providers often follow Medicaid’s

lead in setting their own policies. Medicaid policy, either directly or indirectly, controls the

“There are many adult children with brain injuries being cared for by aging parents in this area. Many of these individuals are currently unable to support themselves.

There are not services, residential or otherwise, in our area to supervise these people when family support runs out.” — Margaret Sak, OTR, South Bend

12

lion’s share of funding. Most persons with moderate or severe brain injury can anticipate

eligibility for Medicaid with lack of employment. The availability of services ultimately hinges

on the funding mechanisms.

Respite Care—It’s not just “babysitting,” but skilled help

to care for people with special needs. Unfortunately, in

Indiana, qualified respite care is often unavailable for TBI

survivors— at any price. An important theme in the public

meetings on service gaps has been Indiana’s lack of

appropriate respite care. Personal care attendants, as

authorized by the TBI Waiver policy, are inadequate; the

policy does not even require them to have a high school

diploma or a criminal background check.

Children— caring for Indiana’s future: TBI is a leading cause of disability to children.

Less than 5 percent of children with brain injury are transferred from hospitals to rehabilitation

facilities. This is mainly due to the fact that children often have parents who can serve as their

caretakers. Many third party providers refuse to pay for rehabilitation services to children unless

they are non-ambulatory. They argue that the

educational system is responsible for providing

services.13 Typically, schools provide therapy and

rehabilitation services once a week and seldom

include behavioral or cognitive retraining.

In 1991, the Individuals with Disabilities Education Act added traumatic brain injury as a

special education coding category. Last year the DOE Division of Special Education approved

438 of Indiana’s children to receive educational assistance under that category. With at least

1,186 new brain injuries occurring every year to children 18 and under, the Indiana educational

system has an estimated 14,232 students with brain injury. While many of these students

probably do not have a need for special education services, it is still clear that DOE is not

identifying the population and services needs adequately.

“We don’t have any help outside of school, as far as speech therapy, occupational therapy, physical therapy; it’s all done in school, one- half hour, once a week.”

— Melinda, speaking at the 4/25/00 Indianapolis town meeting.

“We don’t have lives of our own now… It’s been over two years since we’ve been out to eat, not without Tyler and food being thrown across the room.”

— Melinda, caretaker of Tyler, a Madison County child with shaken baby syndrome, speaking at the 4/25/00 town meeting.

13

“Professional and paraprofessional staff serving students with traumatic brain injury,”

according to the DOE rules, “shall receive specialized in-service training in this area.” However,

because the DOE has “no specific licensure14” for TBI, the specifics of providing this training

are left up to local school districts. The DOE does not

have a list of recommended providers of this training,

and it appears that the training never actually happens.

The majority of school age children and their

caretakers who responded to the survey gave low marks

to Indiana’s educational services for children with

disabilities. Some, however, did rate these services

highly. Perhaps this is due, at least in part, to differences

in training and administration in the various local school

systems.

To Make a Difference

Services for Hoosiers with brain injuries do not

follow a coherent plan. Programs, funding and state

agency leadership are just not adequate to the size of the

problem.

As part of a grant agreement with the ISDH/MCHS,

BIAI conducted a needs assessment survey of persons

with brain injury and their families. This survey

examines the gaps in service from the viewpoints of

consumers, families, professionals, service providers and

state agency personnel. Persons with brain injuries, their families and caregivers were surveyed

with printed forms. Service providers and other professionals were surveyed in focus groups.

General public input was gathered through four town meetings; one in South Bend, two in

Indianapolis, and one in New Albany. The resulting information should give policy makers the

tools to plan a more effective infrastructure for both state and private organizations to deliver

those services.

“They [the schools] maintain that they don’t have the necessary personnel, in many cases, to assist our clients. Our position is that they should hire the necessary personnel.”

—Donna Evans “Under the Education Act they are required to but, more often than not, it becomes the burden of the parents or guardians to always be in there—demanding testing, demanding services, demanding that certain things happen in the education plan… It can be an awful burden on parents.”

—Nancy Smith-Fague, Indiana Department of Vocational Rehabilitation “It is a law but, most times I find that, unless you are an advocate and you work real hard with them and force them to hire somebody that would help your child, it does appear to me, in many cases that they don’t have anybody”

—Donna Evans Dialog at the 4/25/00 Indianapolis town meeting.

14

1 Paraphrased from Brain Injury: The Time Has Come, October 1999, p. 2. Division of Developmental Services, Department of Health and Human Services, 105 Pleasant Street, Concord, New Hampshire 2 Adapted from The Costs and Causes of Traumatic Brain Injury, http://www.biai.org/costsand.htm 04/25/00 3Epidemiology of Traumatic Brain Injury in the United States, The Center for Disease Control, www.cdc.gov/ncipc/dacrrdp/tbi.htm 4 The population of Switzerland County can be checked at http://www.census.gov/population/estimates/county/co-99-1/99C1_18.txt 5 1997 IHHA admissions records 6 Cancer Incidence in Indiana State and County Data 1995 (Published March 1999), Indiana State Department of Health http://www.state.in.us/isdh/dataandstats/cancerinc/caninc95/caninc~1.htm 7 HIV Disease Summary, Indiana State Department of Health, March 31, 2000. http://www.state.in.us/isdh/dataandstats/epdem/2004/hiv.htm 8 Summary of Trends in Reportable Diseases Five Year Totals: Indiana, 1994-1998, http://www.state.in.us/isdh/dataandstats/disease/1998/sum_trends.htm 9 See Living with Brain Injury: A Guide for Families, Richard C. Senelick, MD & Katy E. Ryan, MA, CCC-SLP, ISBN1-891525-00-X 10 See The Journal of Head Trauma Rehabilitation, April 2000, Articles on pp. 767-791. 11 US General Accounting Office Report to Congressional Requesters: Traumatic Brain Injury, Programs Supporting Long Term Services in Selected States, Feb. 1998. Quoted in A Policy Analysis of the Texas Health and Human Services Delivery System, March 1999, The Texas Traumatic Brain Injury Advisory Board, p. 6. skjbits@aol.com 12 Rehabilitation Considerations Following Mild Traumatic Brain Injury, Robert J Fabiano & Julie Daugherty, ATLA tbi, Spring 1999, pp. 5-15. 13 Indiana TBI Grant Project White Paper. p. B-4 14 Demaris Stewart, Education Consultant, IDOE/DSE. Phone conversation with Frank VanArsdall, 07/05/00.

15

Data Analysis

Methodology of Survey Tools

The main objective of the Needs Assessment was to gather data on the needs of

Indiana residents who have suffered a traumatic brain injury as well as the needs of their

family members. In order to accomplish this goal, two separate measures, the Individual

with Brain Injury survey and the Family survey, were constructed with the assistance of a

committee of professionals and various other tools already in use around the United States.

Lay-Person Focus Groups

A series of focus groups to discuss the survey tools were held in November and

December of 1999. The groups were conducted in various locations across the state and

were comprised of 10 -12 persons, including both individuals with brain injury and family

members. The groups reviewed the assessment tools and provided much input regarding the

modification of the measures.

A focus group to discuss service gaps was held in November at Ball Memorial Hospital and

was attended by over 25 individuals with brain injury and family members. Service gaps and

barriers in Indiana were discussed for the duration of two hours. The results of this focus

group on service gaps were woven into the final survey tools. Survey tools utilized for

similar projects were perused and the Illinois Needs Assessment measure, constructed by

Allen Heinemann, Ph.D., of Northwestern University, was utilized as a model for the Indiana

survey. The Individual with Brain Injury survey was an eight-page instrument that included

questions assessing demographic characteristics, injury characteristics, education and

employment experiences, daily activities, substance use, needs and service evaluation, and

life satisfaction.

The Family survey incorporated the same items as the Individual with Brain Injury

survey with the addition of a Family Needs Questionnaire, created by Jeffrey Kreutzer,

Ph.D., of Virginia Commonwealth University. The Family survey was a ten-page instrument

that included correlating questions from the Individual with Brain Injury survey as well as

questions to ascertain the demographic characteristics of the family respondent.

Multiple versions of the assessment tools were reviewed in great detail to ensure

16

optimal question construction. The Project Design subcommittee met on various occasions

during a four-month period to offer assistance on the format and content of the survey

questions and to edit revisions of various surveys.

The study was divided into two major phases: (a) instrument modification and pilot,

and (b) actual administration of assessment tools. Several pilot studies were conducted to

examine current item content and structure and assess its suitability for use with individuals

with TBI and their families. An evaluation of the ease of administration and item clarity was

also assessed. The final versions of the tools were administered to Indiana residents March

through April 2000.

Data Collection

One Survivor Survey and one Family Survey were sent to 801 addresses that where

known to have persons with brain injury or family members of persons with brain injury.

Another 300 surveys were distributed to professionals around the state to pass out to persons

with brain injury (PBI) and/or family members or caretakers (FM). Surveys were returned

by 463 individuals.

Results

The split between PBI and FM was nearly 50% at 231 and 232 surveys respectively.

The breakdown of surveys returned by FM is below:

Surveys Returned by Family Members OnlyRelationship to Brain Injury

0

20

40

60

80

100

120

140

Spouse Parent Sibling Child Other

17

The average age of individuals returning the FM Surveys was 51.5, and 62% live with

a PBI. A majority (75%) of the FM Surveys indicate the respondent provides daily care

ranging from less than one hour to more than eight hours. Those providing daily care had

the average age was 50 (mode of 46; median of 50) with a range from 21 to 80 years old. Of

those providing daily care over 80 percent were female.

The back section of the Family Survey was identical to the Person with Brain Injury

Survey, allowing the Family member to report information about the person with brain

injury’s situation.

Of the surveys returned by persons with brain injury (PBI) 60 percent were completed

by only the PBI, 20 percent were completed by the PBI and a parent, and 7 percent by the

PBI and their spouse. The remaining surveys were completed by the PBI and other family

members or caregivers.

Indiana County Representation

The surveys returned indicated that information gathered represented PBI in sixty-

four Indiana counties (70%). The largest percentage was from Marion county (18%). Other

counties represented include: Lake county (7%), Vanderburgh county (7%), and Tippecanoe

county (4%). St. Joseph, Clark, Hamilton, Allen, and Howard counties each represent

roughly 3% of the sample. Each of the remaining counties (55) represent 2% or less of the

sample.

Caregivers Who Provide Daily Care

0

10

20

30

40

50

60

70

80

Parent Spouse Child/Sibling Other

8+ hrs1 - 8 hrs< 1 hour

18

A Snapshot of Persons with Brain Injury in Indiana

The respondents indicated that the majority of the PBI (61%) were male and

Caucasian (98%) with the average age of 38 years old. Information was returned for PBI in

age ranging from 6 years old to 77 years old. Most of the PBI had only one brain injury, but

11.5 percent reported having received two or more brain injuries. The majority (80%) also

reported receiving all of their care in Indiana.

PBI by Current Age

32

108115

104

70

29

0

20

40

60

80

100

120

140

20 or < 21 - 30 31 - 40 41 - 50 51 - 60 61+

19

Of those who responded, the majority appeared to have moderate to severe injuries

(defined only by length of coma).

The majority of the individuals were injured by automobile crashes (49%) with falls

representing the second largest group (10%). Of the 322 individuals receiving their injury

via an automobile crash, 44 percent of the injuries occurred in the last ten years. Of those in

automobile crashes, only 12% reporting wearing a seatbelt at the time of the crash.

Length of Unconsciousness

67

33 3322

52

107

149

0

20

40

60

80

100

120

140

160

Unkno

wn

Not Unc

onsc

ious

Uncon

sciou

s < 20

min

Uncon

sciou

s 20 m

in - 2

4 hrs

Uncon

sciou

s 1 to

6 da

ys

Uncon

sciou

s 7 - 3

0 day

s

Uncon

sciou

s > 30

days

# of

Res

pond

ents

20

Other reported causes of brain injuries from the survey respondents are listed below:

Relationships

The largest group of PBI are single, never married (195), with the second largest

group that of PBI who are married or living with a partner (180). Another 75 are divorced, 7

are separated, and 6 are widowed. The largest majority (33%) live with their spouse, 25

percent live with their parents, and 17 percent live alone.

Cause of Injury by Decade of InjuryExcluding MVA

0 5 10 15 20 25 30 35 40

Motorcycle

Other Vehicle orPedistrian

Bicycle

Sports or NearDrownings

Falls

Assault, Abuse orGunshot

Disease, Tumor, Strokeor Anoxia

Other

1979 or earlier 1980 - 1989 1990 - 2000

21

Respondents indicated that over 84% of PBI live in private residences. The table

below demonstrates the living environments of the remaining PBI broken down by age:

Independent Living Skills

Living independently requires basic skills for any individual. The respondents

indicated that more than 78 percent of PBI are independent in personal care areas and

walking on flat surfaces. Slightly less (65%) are independent in cooking.

Education

Most of the PBI had highest level of education completed was high school (51%). In

addition, 7 percent had completed vocational/trade school, 9 percent hold an Associate

degree, and 18 percent hold a Bachelors degree or higher.

The second largest group (14%) were those who either were still in school or who had

not completed high school. The question did not distinguish between individuals who were

still in school and those who had dropped out.

Since receiving a brain injury, 179 of the respondents reported the PBI have attended

school. Currently, 50 of the PBI are currently enrolled in school. The majority of those (32)

are enrolled in post-high school classes, while 18 are in high school, middle school or

elementary school. It was reported that 224 PBI needed special education services, but only

PBI Living in Non-Private Residence by Age

0123456789

Assisted Living TransitionalFacility

Nursing Home Other

Under 1818 - 2930 - 3940 - 4950 - 5960+

22

60 percent reported receiving assistance.

Other issues surrounding returning to school were queried in the survey. Charted

below are the questions and responses received.

If he/she (PBI) is currently in school, what does he/she need to succeed in school?

Needs Help to Succeed

Does Not Need Help

Help with homework 35 35 Special School for students with disabilities 17 51 Special education because of the brain injury 31 38 Planning for life after high school 28 41 Guidance counseling for academic and aaaaa vocational plans

38 31

Completing assignments on time 36 35

Employment and Income

When asked about employment in the last month, 34 percent indicated that the PBI

was not working, nor seeking employment. 18 percent indicated retirement due to age or

disability, 15 percent indicated part-time employment, and 10 percent indicated the PBI was

employed full-time. Another 10 percent indicated the PBI was seeking employment.

Source of Income for PBI in Indiana

0

50

100

150

200

250

300

350

Employment Mate or Family FinancialSettlement

Social Security,pension,

workers' comp

MedicaidWaiver

PublicAssistance

Other

23

Persons with brain injury receive income from a variety of sources. Many PBI

receive income from several sources. The charge below details how PBI receive income

from multiple sources.

Transportation

Of PBI whom the survey reported to be age 16 or over, 224 reported the PBI drives.

It is of some interest that not everyone reported to drive holds a valid driver’s license, nor did

everyone who reported holding a valid driver’s license actually drive.

Below is a chart of how individuals travel in the community to take care of every day

errands. Family and/or friends are the sole means of transportation for the PBI 20 percent of

the time for Work/Volunteering; 40 percent of the time for Medical Appointments; 32

percent of the time for Daily Activities (bank, post office, grocery); and 39 percent of the

time for Social Activities. The numbers are even higher if you consider that 19 percent of all

respondents indicated multiple methods are used for travel.

Needs of Persons with Brain Injury in Indiana

Seven out of 27 areas surveyed for level of assistance demonstrate 50 percent or

higher of PBI still need assistance. Those areas in order of highest need are: 1) improving

Current Transportation Methods of PBI

0 100 200 300 400 500

WorkVolunteering

MedicalAppt.

DailyActivities

SocialActivities

Drive SelfFamily/FriendsPublic TransportTaxiAmbulance/MedicabWalkMultiple MethodsOtherDo Not Travel

24

memory, solving problems better; 2) expressing needs, understanding others; 3) managing

stress, emotional upsets; 4) improving his/her job skills; 5) improving mood; 6) finding

places and opportunities to socialize with others; 7) increasing his/her income.

In contrast there were no areas scoring less than 10% needing assistance. The lowest

was “help caring for children” which was at 10.87 percent. PBI are receiving the most

assistance in “traveling in the community” (20.37%) and in “managing money, paying bills”

(20.19%)

Area of Need

# Responding

% Receiving Assistance

% Needing Assistance

Improving memory, solving problems better 427 12.88 79.39 Expressing needs, understanding others 427 14.52 72.83 Managing stress, emotional upsets 426 11.50 69.01 Improving mood 424 12.97 68.87 Improving his/her job skills 405 9.38 66.17 Increasing his/her income 402 7.71 62.44 Finding places and opportunities to socialize with others 425 6.32 61.14 Improving health 423 15.60 58.39 Controlling temper 388 12.11 55.92 Managing money, paying bills 416 20.19 55.77 Feeling part of the community 417 8.39 55.04 Coordinating the services received 410 16.34 54.88 Participating in sports and recreation 413 6.30 51.34 Fulfilling needs for intimacy 389 4.63 50.39 Receiving additional education 407 6.63 49.14 Finding paid employment 402 6.47 48.72 Increasing independence in housekeeping, cooking 416 10.10 46.16 Traveling in the community 432 20.37 44.21 Increasing independence in walking, lifting, balancing 419 10.02 40.09 Participating in religious services or spiritual programs 415 13.25 34.94 Obtaining equipment such as wheelchairs, computers, etc. 417 8.63 34.53 Finding housing that is Affordable and accessible 411 6.08 33.09 Obtaining personal care attendant/ assistant services 406 10.34 31.77 Increasing independence in eating, dressing, bath, etc. 426 12.21 30.75 Controlling alcohol and/or drug use 399 1.75 14.03

25

Life Changes for Persons with Brain Injury

It is clear from the respondents that brain injury changes life for persons with brain

injury. The majority (69%) reported that brain injury impacted life by making activities

more difficult or impossible. There was no significant difference in responses given by FM

or PBI.

When specifically asked about change with relationships with select individuals

responses are below. A large group (212) of PBI have received counseling on issues related

to relationships.

Alcohol use

Siblings, friends, children, and PBI did not report a significant need for controlling

alcohol use in individual with TBI. Fifteen percent of parents reported that the PBI does not

need help controlling alcohol, and only 4% reported needing help. Spouses reported that

12% do not need help, while 2% reported that they do. Survivor only reports indicate that

26% believe they do not need help, while 1% report that they do.

Service Delivery Evaluation

The respondents were asked to evaluate various services on a 5-point Likert scale,

with responses ranging from ‘1' (strongly agree) to ‘5' (strongly disagree). Areas of services

that were evaluated included: timeliness, dependability, capability, and accessibility. The

Quality of Life Change for PBI in Specified Areas

0

50

100

150

200

250

300

350

For Worse For Better No Change

Living situation

Relations with others

Relations with other familymembers

Relations with spouse orsignificant other

Relations with friends

Medical health

Employment situation

Psychological well-being

26

average response was neutral or ‘3', indicating that most respondents did not express strong

views regarding the delivery of services. The services that most respondents seemed most

satisfied with include: Social Security, Brain Injury Association of Indiana, and

Rehabilitation Services. On average, respondents report Social Security as capable/skilled at

providing services. Housing, transportation and Independent Living Centers services

received the most negative responses in general, indicating that most respondents were not

satisfied with the timeliness, dependability, capability, or accessibility of such services. A

breakdown of responses is shown on the next pages.

On average, 56% of family members who responded report that they were not aware

that such services were available when most needed, while 57% of Survivors, who reported

for themselves, also indicate that they were not aware of these services.

27

1.00 2.00 3.00 4.00 5.00

SD D N A SA

Accessible

Capable

Dependable

Timely

Are

aService Delivery

BIAI Rehab Services Medicare/Medicaid Social Security Nursing Homes Home Health Education Transportation ILS Housing

28

Professional Focus Groups

One of the requirements of the grant was to survey various professionals from

throughout the state who provide services to individuals with brain injury regarding service

gaps that affect individuals with brain injury. Eight Professional Focus Groups were held

around the state in nine cities of various sizes. Each focus group consisted of 10 -16

professionals who provided services or programs to persons with brain injury. Each focus

group lasted for approximately two hours.

Each meeting began with an introduction to the Grant and a Brain Injury Knowledge

Quiz influenced by the work of Janet Tyler, Ph.D. of the University of Kansas. The quiz was

collected and answer keys disseminated. Following the quiz, a discussion proceeded in an

orderly fashion beginning with identifying gaps in services within the local area and

progressing toward identifying gaps statewide. The professionals were also asked to provide

potential solutions to the problems addressed within the discussion.

The analyses of the professional focus groups indicate that seven common issues were

identified as gaps in the state of Indiana, each representing a challenge to providing

comprehensive services for individuals with brain injury.

To begin, lack of funding was reported by all groups as the major challenge to the

accessibility and availability of services. Individuals have difficulty accessing services as

insurance companies do not adequately provide funding and providers are often forced to

“close their doors” due to a lack of reimbursement or financial support for services provided.

The inefficiency in the continuity of services resulting in a poorly structured

continuum of care is perceived to be a significant challenge in Indiana. Many professionals

report difficulties in collaboration with other service providers that may be attributed to a

lack of communication or lack of knowledge of various organizations and programs

available. Service providers of rural areas indicated that the lack of transportation in their

area might contribute to the inability to access services and therefore, interrupt the continuity

of services. Most participants agreed that a system for “follow-up care” should be

implemented to ensure the continuity of services while others proposed the creation of a

comprehensive care facility to provide the complete spectrum of services.

Another gap in services voiced by the groups is the lack of a centralized agency to

29

provide information and integrate services for brain injury. Such an agency may serve to

provide access to information to families and professionals regarding needs and resources

available in the state as well as help to coordinate services without a conflict of interest.

Coordination of services was identified as lacking within and between various service

providers. It is also hypothesized that the creation of a centralized agency may facilitate

“seamless” care along the service continuum.

Most communities identified a lack of education as a major gap in Indiana. Most

groups identified a need for education about brain injury for families, professionals, school

personnel, insurance companies and other funding providers, as well as the general public.

Most professionals agree that most service delivery systems lack the knowledge and training

to serve this population. Education was also identified as a major means of prevention and

most groups agreed that education on brain injury must be mandated by the government in

order to ensure that school age children are exposed to such information as helmet safety, the

use of seatbelts, and consequences of brain injury.

Other major gaps identified in Indiana include the lack of the following services (a)

post acute long term care, (b) independent supervised living centers devoted to the care of the

brain injured patient, and (c) pediatric rehabilitation services, including school support

services. Such services are rare or non-existent in the state of Indiana, though much energy

is currently being directed toward remedying these challenges.

Regional Town Meetings

A series of four town meetings were held as part of the needs assessment survey. The

general public was invited to discuss their needs and concerns regarding brain injury. These

meetings; one in South Bend, two in Indianapolis, and one in New Albany, gathered public

input from a wide cross-section of Hoosiers.

At each meeting, a panel of government agency officials and service delivery

professionals were invited to discuss these concerns in a give-and-take session with the

audience. Within each audience were persons with brain injuries, family members, and

concerned professionals— including nurses, neuropsychologists, occupational therapists,

college students, a state legislator, and representatives from local and federal office-holders.

The resulting dialog gave a revealing look at Indiana’s current system of service delivery.

30

The meetings were publicized through a combination of press releases, advertising (in

smaller newspapers and in The Fax Daily), radio public service announcements, and

invitations to persons on the BIAI’s mailing list. The University of Indianapolis’ Office of

University Relations provided some assistance with contacting the news media.

Audience participation ranged from 35 to 45 individuals per meeting. Each panel

consisted of four to six participants and a moderator. Panel members at each meeting were:

1) Indianapolis #1 04/25/00 Donna Evans, Indiana Medicare TBI Waiver Program Karen May, RN, CRRN, Brain Injury Association (national) Board of Directors Robert Meeks, Indiana State Senate, R-Kendallville William Schmidt, CEO (at that time), Health South Hospital of Terre Haute Nancy Smith-Fague, Indiana Department of Vocational Rehabilitation Moderator: Thomas Doehrman, Esq. Attorney

2) South Bend 05/08/00 David Haluda, Indiana Department of Vocational Rehabilitation Marie Reimers, CICOA Lonnie Douglas, South Bend Commission on Human Rights

Karen May, RN, CRRN, Brain Injury Association (national) Board of Directors Margaret Sak, OTR, Clinical Manager South Bend Memorial Hospital Moderator: Thomas Doehrman, Esq. Attorney

3) New Albany 05/10/00 Ramona Miller, Area 14 AACS, Lifespan Resources, Inc. Kevin Blevins, Division of Aging and Rehabilitation Services. Mary Haas, President, the Brain Injury Association of Kentucky. Karen May, RN, CRRN, Brain Injury Association (national) Board of Directors Moderator: Penny Lewis, CEO & President, BIAI.

4) Indianapolis #2 06/15/00 Charlotte Steidom, CICOA Doug Bebee, Indiana Department of Vocational Rehabilitation Demaris Stewart, Indiana DOE Special Education consultant Donna White, IndyGo, ADA service representative Rama Rothe, Center for Comprehensive Services, Carbondale, IL. Nancy Ford-Winters, Advocate, Social Security Disability issues Moderator: Bill Schmitt, Administrator, Health South Surgery Center

Each meeting began with a presentation, using Microsoft PowerPoint, of facts and

statistics on brain injury in Indiana by Penny Lewis. Following this the moderator would

open the floor for questions and comments from the audience. Videotapes were made of each

meeting. Still photographs and audiocassette recordings supplemented these. In some

31

instances, follow-up interviews were conducted with audience members.

Expressed Concerns

1. Funding of services. The majority of concerns fit under this broad category. Some of

them were:

a. Disparity between Medicaid reimbursement rates for in state and out of state

services.

b. Inadequacy of Medicaid rate for long term needs.

c. Impact of the Medicaid rate on the existence of service providers.

d. Small number of Medicaid TBI Waiver slots funded

2. Availability of services regardless of funding:

a. Respite care

b. Transportation

c. Long term care facilities

d. Residential facilities

3. Case Management

4. Coordination of services/ single point of entry for government services

5. Unavailability of information about brain injury to survivors and families

6. Lack of appropriate special education and rehabilitation services for children with

brain injuries in the school system.

Gender: 65%

male

32

Summary

Comparison with Other Studies

In order to feel comfortable with the collected data and outcomes, the data was compared

to similar data from the Traumatic Brain Injury Model Systems National Data Center

(TBIMS), and other needs assessments completed under similar grants from Iowa,

Oklahoma, Massachusetts, New Hampshire, Texas, West Virginia and Wisconsin. Due to

difference in data collection instruments, direct comparison was not always available.

When comparing the findings of this Needs Assessment to the Traumatic Brain Injury

Model Systems National Data Center (TBIMS) the average age of PBI was similar (38 years

to 36 years respectively) with the range for other states from 27 to 33 years of age. The

breakdown of gender was also similar (male 61 and 75 percent respectively). The range from

other states was from 52 to 69 percent male.

Minority participation was disappointing in all studies with the exceptions being TBIMS

which was able to initiate data collection, and Iowa which has a low minority population

overall.

In regard to cause of injury, motor vehicle crashes the primary cause of injury in all

studies, responsible for 53 percent in Indiana and between 33 and 65 percent in other states.

All studies related many of the cases to lack of safety devices (seat belts, motorcycle

helmets). Alcohol and drugs also played a role in these incidents. Falls are almost always the

second most common cause of injury. Indiana’s rate of 10 percent turns out to be the most

frequently observed rate.

The Texas, Wisconsin, and West Virginia studies tend to support Indiana’s findings that

most PBI live with family members and depend on them for support. Differences in methods

of collecting and presenting data, however, make direct comparisons difficult.

The Center for Disease Control calls brain injury “the silent epidemic.” This is true not

only in the nation, but in Indiana. Traumatic brain injury in Indiana has an incident rate of

149 per 100,000 Hoosiers. This includes only those PBI who required overnight

hospitalization. The number would be significantly larger if there was a means to collect

data from emergency rooms, physician’s offices, and clinics. To add perspective, the

33

incident rate of breast cancer is 55 per 100,000 Hoosiers, and the rate of AIDS/HIV is 9 per

100,000.

Looking at per capita, the Indiana counties with the most residents admitted to Indiana

hospitals for brain injury are Vermillion, Morgan, Parke, Knox, Lake, Warren, Pike,

Montgomery, Greene, and Davies. When compared to the data received in the Needs

Assessment, 10 percent of all respondents were from these counties.

There are limitations to this study including the pool of people surveyed was not a

random sample of Indiana, and the survey tool was not validated, but is similar to other tools

that have been validated. A second limitation that needs to be noted is that the majority (55

percent) of the PBI were unconscious greater than one week. Only 14 percent reported either

not being unconscious or being unconscious for less than 20 minutes. This limits the studies

ability to address the needs of PBI who had mild injuries. In addition, a small portion of the

respondents have acquired brain injury (i.e. stroke, disease), but not traumatic brain injury.

Regardless of how the brain injury occurred, the deficits that follow are similar.

Taking into account the above comparisons, the Indiana Needs Assessments appears to be

a valid and reliable survey of the brain injured population in Indiana. Overall, the data

collected demographically appears to be similar to that of other states that have completed

Needs Assessments through federal grants. In addition, the general population of the Indiana

Needs Assessments aligns closely with that of the TBIMS.

Indiana Needs Assessment

The Needs Assessment and Indiana records of hospital admissions both support the idea

that brain injury affects the core of society. Many are children, just starting to explore life,

but an even larger number are young adults—people from the backbone of our economy,

people who are often trying to start families of their own. Young men 19 to 34 years of age

are the hardest hit of all Hoosiers— they alone make up 16 percent of all hospital admissions

for TBI in 1997. In looking at the Needs Assessment, over one-third of survey respondents

reported that the PBI was a student at the time of injury. This particular group of PBI has a

variety of needs, but community re-integration tops the list. Returning these individuals to

gainful employment so that they can live independently within the community is critical.

34

Another group of people that are particularly vulnerable to brain injury are aging

Hoosiers. Women 65 years and older have the second highest rate of hospitalization due to

TBI. (1997). This particular group did not show up in the expected numbers in the Needs

Assessment (3.02 percent), and it is unclear why they were not surveyed, although there

could be several reasons. The reasons might include lack of referral for community supports

due to institutional referral (lack of insurance or age discrimination) or higher mortality rates.

As the aging population increases and expects more from life during the later years in life, it

is important that individuals, regardless of age, be returned to the community rather than

institutionalized.

Another overlooked group involves aging women as well. The majority of caregivers are

women, and the Needs Assessment demonstrated that an average age of 50 (mode 49; median

50) providing daily care. Combine this with the fact that family provides the majority of

transportation for PBI (again, assume it is the female caregiver) and assists with monitoring

health, coordinating services, managing money, and paying bills a serious problem begins to

visualize. As the population of the PBI ages, so will the caregiver. Who will provide the

daily care, transportation, coordinating services, and money management when the current

caregiver (parent or spouse) is no longer able or available? What will become of this aging

population of PBI – institutionalization, incarceration, or homelessness?

The Needs Assessment supports the wide spread perception that Indiana’s current system

of services does not and cannot meet the needs of this growing population. The stories of

unmet needs remain consistent from survivors, families, service providers, medical

professionals and state officials.

More specifically, over 50 percent of Hoosiers with brain injury surveyed report that they

need assistance in fourteen key areas. These key areas can be broken down into four general

areas: Cognitive Therapy or Training; Socialization; Employment; and Medical.

Cognitive Therapy. Most of the unmet needs reported involve cognitive skills, without

which day-to-day life becomes chaos, not only for the injured persons, but also for those who

are close to them. This need is compounded when you consider that most of these were active

young men before their injuries. Difficulty with cognitive issues (memory/learning) impacts

every day from remembering to turn off the stove, to learning a new telephone number. It

35

impacts home, work, and play. Often cognitive issues impair a person's ability to live alone,

work without support systems, drive, socialize, and coordinate available services. This need

tops the list of needs with over 79 percent of respondents stating they require assistance in

this area, with only about 12 percent actually receiving assistance. If you add to this those

who need assistance with housekeeping, cooking (46 percent requiring/10 percent receiving),

and those who need assistance with daily skills such as eating, dressing, and bathing (30

percent requiring/12 percent receiving) you will see the picture expand from a portrait to a

landscape.

The most likely reason that so few are receiving assistance is the lack of funding rather

than lack of programs. Medicaid does not pay for cognitive therapy, and this is important to

note since most individuals will either lose their insurance when they become unemployed or

cap out private insurance and require Medicaid.

Socialization. Following a brain injury it is often stated that the person is not the same.

Due to this change in personality and cognitive abilities previous friends and acquaintances

distance themselves. This is true for the family as well. Combine this with lack of

employment, which provides a natural place to socialize— the individual and family become

isolated. Often the PBI develops mood swings, inappropriate social behaviors, anger, and

frustration. This leads to serious needs including assistance with communication, and social

skills via counseling. Those reporting indicated less than 15 percent are receiving assistance,

while as many as 72 percent expressed need in these areas.

Many of those responding desired a spouse (more specifically a wife) or a significant

person in their life. A majority (42 percent) reported being single, never married and nearly

18 percent reported being divorced or separated.

For those who are married either at the time of injury or following injury, the stress

placed on a spouse to support the family, run the household, and provide care for the PBI is

significant. Not only a lack of funds, but also a lack of time to receive counseling becomes

an issue. Finding affordable and quality providers of respite care is difficult in rural Indiana.

While BIAI support groups provide peer support, professional support and respite are both

missing puzzle pieces. Combine this with the information about aging caregivers, and you

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find out that not only are caregivers aging, they are also experiencing burnout in record

numbers.

The gap in those who need assistance and those who are receiving assistance could be

attributed to many factors, not the least being unawareness of injury on the PBI’s part.

Funding may also be a stumbling block as well as the stigma with receiving psychological

assistance. From the knowledge quiz given (average score of 60 percent) during the

Professional Focus Groups it is evident that even if a PBI attempted to receive counseling, it

would be doubtful the professional providing the service would be knowledgeable in issues

surrounding brain injury.

Employment. Returning to work can create a variety of issues for both the PBI and their

employers. Even in mild brain injury memory, executive functioning skills (planning,

organizing, initiating), and fatigue can make returning to work difficult. Many individuals

cannot return to the previous career, and lack of memory or lessened cognitive ability makes

learning new job skills timely and tedious, often requiring job carving, job coaching, and

supportive employment programs.

Add to this the issues of inappropriate social behavior and transportation difficulties, the

stumbling block to self-sufficiency becomes apparent. But the number desiring paid

employment is great (over 48 percent). Often long-term memory is left intact with memories

of past success, self-worth, and confidence driving the PBI to find employment. Over 62

percent reported needing assistance in improving job skills and increasing income. The wide

gap between ‘what was’ and ‘what is’ causes additional emotional distress.

While Vocational Rehabilitation attempts to provide services, the fact is there is no

funding for long-term supportive employment for PBI. Funding is available for other

specific groups, but brain injury is excluded. In addition, Vocational Rehabilitation has to

triage individuals to stretch limited funding, and the result often leaves persons with

cognitive issues out of the service loop. Since many PBI has no physical issues, they can fall

through the cracks if a case manager or family member is not available to discuss the

cognitive issues associated with brain injury with the rehabilitation counselor. Self-advocacy

is very difficult for PBI, who may actually be unaware of their deficits (imagine forgetting

that you have a brain injury – it happens).

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Along with employment is income. It was somewhat disappointing that less than 9

percent of PBI received a financial settlement considering that 49 percent were injured in

motor vehicle crashes. Not surprisingly, nearly 300 of reporting individuals receive SSDI,

SSI or Worker’s Comp. What is surprising is that less than 50 of those individuals are

receiving public assistance such as food stamps. This has to be attributed to lack of

information rather than individuals not meeting qualifications since they are qualified for

SSDI or SSI.

Medical Issues. Improving and maintaining health is easier when someone remembers to

take prescriptions, make appointments, and initiate exercise and diet routines. It is also

apparent that initially physical and occupational therapy is provided, when progress becomes

limited it is discontinued. Often therapies are required for maintaining current levels, even if

not reaching new goals. Research has shown that PBI can make progress even 10 to 15 years

post injury. Unfortunately insurance providers only provide for defined progress and not

maintenance. Without maintenance, the backward slide begins. Over 58 percent report

needing assistance with improving health, and another 34 percent report needing assistance

with obtaining equipment such as wheelchairs. Stretching medical care to include personal

care attendant/assistant services you find that over 31 percent need assistance (only 10

percent receiving).

Other Areas of Concern

Living Arrangements: Adults typically do not desire to live with strangers or unrelated

individuals. Adults tend to live with a spouse/significant other or alone. There is no reason

to believe that PBI desire to live in any other manner, yet 16 percent live in group homes,

nursing homes, or other institutional type facilities. In addition, another 25 percent live with

their parents. Only 50 percent of the PBI live with a spouse or on their own.

Education: Of the 224 PBI reporting a need for special education services, only 60

percent reported receiving such services. The majority of those reporting required assistance

in planning for after school and assistance with homework. The majority of individuals rated

Education Services between “no opinion” to “dissatisfied.” This mostly can be attributed to

the differences between school systems, as some rated very high and others very low. It is

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clear that more information needs to be supplied to all teachers to assess students needs and

assist with developing successful IEPs.

Transportation: This is another area where some parts of Indiana rated very high and

others very low with an overall view being similar to Educational Services. Returning to the

community and living independently requires the ability to drive or use other means with

relative ease. In Indiana, the lack of quality public transportation around the state is a

problem not only for PBI, but for anyone who does not have access to a car and/or a driver’s

license. Again, the caregiver/family member is picking up the load in providing

transportation for every area of life for the PBI. There is not an easy solution to this problem,

except to say providing transportation would be much less taxing on the parent/spouse if they

did not also have to provide coordination of services, managing money, overseeing daily care

and a variety of other tasks.

Alcohol & Drug Use: The sample reported very little need for assistance with this

particular area, which is contrary to the other state’s reports. One thought on the reasons for

such a low number, is denial on both the PBI and family’s part. This is one area where

assistance is available around the state, and most insurance, including Medicaid, is willing to

consider covered.

Areas of Service: Respondents were asked to rate various services on the ability to

provide services (see chart on page 27). What was interesting is the fact that over 56 percent

of respondents were not aware of such services when they needed them most. As for who

finally shared with them information about services it was Family/Friends (21.82 percent)

and Social Worker (22.68 percent). It was surprising that doctors and or nurses provided

referral information less than 9 percent of the time. All other professions (i.e. attorney, case

manager, minister, etc.) provided the information less than 5 percent of the time.

Professional Focus Groups: The general consensus was new funding mechanisms must be

developed in order for Hoosiers to have adequate and accessible services. There is general

agreement that the state legislature needs to work on such a mechanism to harness public and

private sources of funds. Lack of information and direction to available resources is also a

critical problem for Hoosiers with brain injury, their families and service providers. Families

need to know, beginning at the hospital, where to turn for help, how to access the services

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and sources of financial assistance that are available. The professionals are even unsure

where to send families or how to access the programs that are available.

Prevention: Changing the view of those in Indiana on prevention is critical. Over 49

percent of those injured were injured in automobile accidents. Recent legislation (Primary

Seatbelt Law and Graduated Licensing) should affect the numbers of severe injuries in

Indiana. Several other areas still remain frontiers in the prevention field such as helmet usage

(both motorcycle and bicycle) which account for 7 percent of the overall cause of brain injury

in the respondents. Other types of vehicles including ATV’s account for an additional 12

percent. If you include pedestrians the total number of those reporting receiving a brain

injury via a vehicle crash (regardless of type) the total exceeds 73 percent of injuries. This

large number of individuals receiving injuries via vehicle crashes should not crowd out other

means of receiving brain injury that are growing in numbers, including violence (assault,

abuse, gunshots) and sports injuries (soccer, football, boxing).

While some motor vehicle issues must be addressed legislatively, it is clear that general

education is needed in prevention with the elderly, adults, teens and children. These

prevention programs must cover all areas such as falls, sports, violence, helmets, and motor

vehicles.

Planning for the Future

Hoosiers support every effort to save life, but with brain injury that is only the first stage.

Hard questions that rise from the act of saving a life still remain. Necessary services and

supports must be available to allow persons with brain injury and their families to be active

in the community and exercise control over their life.

Every fifty minutes a Hoosier is hospitalized for brain injury. He or she may deal with the

effects for weeks, months, or an entire lifetime. The injury will reach out and touch the

family, friends, employers, and neighbors. Children will be overlooked while parents

provide care for another child. Teens will keep friends at an arms length for fear they will

meet their sibling or parent who has a brain injury. Spouses will make difficult decisions

because the person who came home from the hospital is not the same person who was at the

wedding alter. Parents will quit jobs, and become caregivers who wear themselves out and

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drain their resources to provide for adult children with brain injuries, and worry day after day

about what will happen when they can no longer provide care for their child.

Not every challenge faced by those affected by brain injury can be addressed, but it is

clear, burdens can be relieved.

Suggested Strategic Plan

1. A Single Point of Entry for Government Provided Services Regardless of what hospital

or physician provides service, individuals with brain injury need to know what services

and programs are available (rehabilitative, cognitive, emotional, residential, vocational,

transportation, etc.). There should be one phone number to call for information or referral

to ease entry to the system of services and supports which may apply to individuals with

brain injury. The challenge of just finding out what is available overwhelms many people

who have never required public monies or services in the past. The lack of a single point

of entry effectively shuts those in need out of the system. Such a “signpost to point the

way” requires authorization from the state of Indiana for all service providers to utilize

the system. Legislation is being introduced in the 2001 Legislative Session to appoint the

Brain Injury Association of Indiana as the single-point of entry in the state.

2. Increasing Awareness Develop a campaign whereby both the general population and our

legislature become aware of the causes and resulting issues of brain injury. This will

require recommendations of the TBI Advisory Committee; a proclamation by the

Governor as October of each year to be known as Brain Injury Awareness Month,

government funding to produce awareness posters, billboards, and PSA’s to increase

awareness in the general public.

3. Education Department of Education will create a brain injury training are on their

IDEAL website with modules in the following areas:

A. Brain Injury 101

B. How to Identify Students with Brain Injury

C. A Suggested IEP Checklist for Children with BI

D. Brain Injury & Vocational Rehab Transition Unit

E. Sports and Playground Prevention Programs

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The DOE will revisit the definition of traumatic brain injury in the Indiana State Board of

Education’s Special Education Rules, Title 511, Article 7, Rules 17-31, to verify it is current

and appropriate so children with deficits resulting from brain injury are provided appropriate

services in the schools.

4. TBI Medicaid Waiver Family Social Service Administration will review the TBI Medicaid

Waiver, including provider requirements, service definitions, age restrictions and policies

inhibiting access to the Waiver. The TBI Advisory Committee will support legislative

efforts to increase funding to service 600 persons via the TBI Medicaid Waiver following the

initial model period.

5. Medicaid Policy on In-State Funding of Cognitive and Behavioral Programs Family Social

Service Administration in conjunction with HealthCare Excel will review with the TBI

Advisory Committee their written policy that prohibits providing quality

cognitive/behavioral programming on an inpatient basis in Indiana. Together they will draft

new policy recommendations to keep Indiana tax dollars in Indiana.

6. Prevention The TBI Advisory Committee will support legislative efforts of the Governor’s

Council on Impaired and Dangerous Driving to increase awareness and compliance with

existing and future seatbelt and helmet legislation, and changing blood alcohol level laws to

.08. In addition, the TBI Advisory Committee and the Brain Injury Association of Indiana

will work with the Criminal Justice Department and law enforcement agencies in Indiana to

develop awareness programs for law enforcement and correctional officers to increase

knowledge, understanding and implications of brain injury on individuals.