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 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

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

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

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

Indianas Problem

Brain injury is a leading cause of death and disability to Indianas 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 Healths 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.

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 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. 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. Alzheimers 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.

Cognition is a complex collection of

mental skills that include attention, perception, comprehension, learning, remembering, problem solving, reasoningThese 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.

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

Hoosier Medical Problem

(Most recent data available for each)

Known Incidence 8818 3896 3711 2760 678 548 513 260 Table 1

Incidence per 100,000 Hoosiers 149.26 59.2 55.3 41.6 10.0 9.38 7.8 4.4

Brain Injury (1997) Lung & Bronchial Cancer (1995)6 Breast Cancer (1995)5 Prostrate Cancer (1995)5 All Skin Cancers (1995)5 AIDS and HIV (March 2000)7 Leukemia (1995)5 Hepatitis A, B & C (1998)8

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:

Indiana Brain Injuries by age and sex 1997

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

0-6 F 2.97% 65+ F 14.50% 65+ M 12.72% 0-6 M 4.19%

7-12 M 2.97%

7-12 F 1.34% 13-18 M 7.99% 13-18 F 3.80%

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

55-64 F 2.33% 55-64 M 3.83% 45-54 F 2.92% 45-54 M 5.95% 35-44 F 3.93% 35-44 M 8.66%

19-34 M 15.54% 19-34 F 6.36%

seeing that they get the services needed to rejoin their communities. Why havent 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 1980s, 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. Someones family may notice that He just hasnt 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.

Rarely are the Consequences limited

to one set of symptoms, clearly delineated impairments, or a disability that affects only a part of a persons 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

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 Alzheimers, 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 skillshave 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 ones ability to live independently. Adults with brain injury, the report says, often do not recognize their own limitations; they often have

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

Results of recent studies tell

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.

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.

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

I have been incarcerated in

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

Ed, a severe TBI survivor at

the Fort Wayne town meeting on service gaps, 6/08/00

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

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

Once youre scraped up off

the pavement, youre on your own
Vicky, an Indianapolis woman
with multiple brain injuries, referring to the availability of information to survivors of TBI 4/25/00

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.

The biggest problem that counselors have

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 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 issueswe just dont have enough support to make sure that things are carried through.
Dave Haluda, Indiana Department of Vocational
Rehabilitation, South Bend Area Supervisor

with brain injury are often life-long, but the needs that they present change over a persons 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 concernexpressed by both survivors and service providersthe effective spread of information about brain injury and its 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

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 Indianas 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

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

There is a difference

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

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

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

We just dont 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 Medicaids TBI Waiver Unit

There would be those providers if the [Medicaid] rate were high enough That is part of the problem. Its not anywhere near as high as it is for out of state placement
Senator Meeks Dialog at the 4/25/00 Indianapolis town meeting.

10

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

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

There are many adult children with

11

lions 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 CareIts 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 Indianas 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 Indianas 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.

We dont have lives of our

own now Its been over two years since weve 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.

We dont have any help outside of

school, as far as speech therapy, occupational therapy, physical therapy; its all done in school, onehalf hour, once a week.
Melinda, speaking at the 4/25/00 Indianapolis town meeting.

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 Indianas 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.

12

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 Indianas 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 dont 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 theredemanding 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 dont have anybody
Donna Evans Dialog at the 4/25/00 Indianapolis town meeting.

13

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
3

The population of Switzerland County can be checked at http://www.census.gov/population/estimates/county/co99-1/99C1_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, CCCSLP, 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.

Epidemiology of Traumatic Brain Injury in the United States, The Center for Disease Control, www.cdc.gov/ncipc/dacrrdp/tbi.htm

14

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

15

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 Only
Relationship to Brain Injury

140

120

100

80

60

40

20

Spouse

Parent

Sibling

Child

Other

16

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

Caregivers Who Provide Daily Care

80 70 60 50 40 30 20 10 0 Parent Spouse Child/Sibling Other 8+ hrs 1 - 8 hrs < 1 hour

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 injurys 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 sixtyfour 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.
17

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

140 120 108 100 80 70 60 40 32 20 0 20 or < 21 - 30 31 - 40 41 - 50 51 - 60 61+ 29

115 104

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Of those who responded, the majority appeared to have moderate to severe injuries (defined only by length of coma).

Length of Unconsciousness
160 140 # of Respondents 120 100 80 60 40 20 0
da ys U nk no w nc on sc -2 4 20 da ys -3 0 30 > 6 da ys n io us in m hr s

149 107 67 52 33 33 22

U nc on sc io us

m in

to

<

7 U nc on sc io us

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.

U nc on sc io us

U nc on sc io us

19

U nc on sc io us

N ot U

20

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

Cause of Injury by Decade of Injury

Excluding MVA

Other Disease, Tumor, Stroke or Anoxia Assault, Abuse or Gunshot Falls Sports or Near Drownings Bicycle Other Vehicle or Pedistrian Motorcycle

10

15

20
1980 - 1989

25

30

35

40

1979 or earlier

1990 - 2000

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.

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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:

PBI Living in Non-Private Residence by Age

9 8 7 6 5 4 3 2 1 0 Assisted Living Transitional Facility Nursing Home Other

Under 18 18 - 29 30 - 39 40 - 49 50 - 59 60+

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

21

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? Help with homework Special School for students with disabilities Special education because of the brain injury Planning for life after high school Guidance counseling for academic and aaaaa vocational plans Completing assignments on time 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
Source of Income for PBI in Indiana 350 300 250 200 150 100 50 0
Employment Mate or Family Financial Settlement Social Security, pension, workers' comp Medicaid Waiver Public Assistance Other

Needs Help to Succeed 35 17 31 28 38 36

Does Not Need Help 35 51 38 41 31 35

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.
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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 drivers license, nor did everyone who reported holding a valid drivers 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.

Current Transportation Methods of PBI

Social Activities Daily Activities Medical Appt. Work Volunteering 0 100 200 300 400 500 Drive Self Family/Friends Public Transport Taxi Ambulance/Medicab Walk Multiple Methods Other Do Not 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

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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%)
# Responding 427 427 426 424 405 402 425 423 388 416 417 410 413 389 407 402 416 432 419 415 417 411 406 426 399 % Receiving Assistance 12.88 14.52 11.50 12.97 9.38 7.71 6.32 15.60 12.11 20.19 8.39 16.34 6.30 4.63 6.63 6.47 10.10 20.37 10.02 13.25 8.63 6.08 10.34 12.21 1.75 % Needing Assistance 79.39 72.83 69.01 68.87 66.17 62.44 61.14 58.39 55.92 55.77 55.04 54.88 51.34 50.39 49.14 48.72 46.16 44.21 40.09 34.94 34.53 33.09 31.77 30.75 14.03

Area of Need Improving memory, solving problems better Expressing needs, understanding others Managing stress, emotional upsets Improving mood Improving his/her job skills Increasing his/her income Finding places and opportunities to socialize with others Improving health Controlling temper Managing money, paying bills Feeling part of the community Coordinating the services received Participating in sports and recreation Fulfilling needs for intimacy Receiving additional education Finding paid employment Increasing independence in housekeeping, cooking Traveling in the community Increasing independence in walking, lifting, balancing Participating in religious services or spiritual programs Obtaining equipment such as wheelchairs, computers, etc. Finding housing that is Affordable and accessible Obtaining personal care attendant/ assistant services Increasing independence in eating, dressing, bath, etc. Controlling alcohol and/or drug use

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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.

Quality of Life Change for PBI in Specified Areas

350 300 250 200 150 100 50 0 For Worse For Better No Change

Living situation Relations with others Relations with other family members Relations with spouse or significant other Relations with friends Medical health Employment situation Psychological well-being

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

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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.

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Service Delivery

Timely

Dependable

Area Capable Accessible

1.00

2.00

3.00

4.00

5.00

SD BIAI Rehab Services Medicare/Medicaid

D Social Security

N Nursing Homes

A Home Health Education

SA Transportation ILS Housing

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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

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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 Indianas current system of service delivery.

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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 BIAIs 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
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Gender: 65% male

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.

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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. Indianas rate of 10 percent turns out to be the most frequently observed rate. The Texas, Wisconsin, and West Virginia studies tend to support Indianas 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, physicians offices, and clinics. To add perspective, the

32

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 adultspeople 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.

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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 Indianas 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

34

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

35

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 PBIs 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 Workers Comp. What is surprising is that less than 50 of those individuals are receiving public assistance such as food stamps. 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 This has to be attributed to lack of information rather than individuals not meeting qualifications since they are qualified for

37

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 drivers 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 states reports. One thought on the reasons for such a low number, is denial on both the PBI and familys 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

38

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

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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 PSAs 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 Educations 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 Governors 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.

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