From Sea to Shining Sea:
Services and Support for Brain Injury
Joanne McGee, Ph.D.
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The United States of America covers a lot of territory. During the years that America was being settled by the Europeans, all of this vast and rugged territory proved daunting to many. During the years of the American Revolution, it proved to be daunting for the British soldiers (but an advantage for the Revolutionary soldiers). Now that there are highways, airplanes, supermarkets and chain restaurants connecting this expanse of land, it doesn’t seem so daunting. Is it not remarkable, however, that even before these “connections,” an organized system had developed whereby individuals from any part of this country could influence nationwide decisions and that those decisions could then be implemented in a state-specific manner depending upon the needs of the people who lived there?

When it comes to brain injury, all states have a common cause, whether it receives adequate recognition or not. In statistical reporting of injury and disease, it is a standard procedure to report the annual rate of incidence per 100,000 in the population. In this way, comparisons can be made (e.g., from one region to another) no matter what the population is, sort of. When comparing rates of brain injury incidence from state-to-state, one has to consider the opportunities for injury, which vary depending on the region (number of high-risk occupations, for example).

Most reports of incidence of traumatic brain injury (TBI) (the most common cause of injury to the brain) separate the rate of permanent disability from fatality. Separated, the rates are alarming no matter what state a person is from, but combined they are even more so. Based upon data collected by the Centers for Disease Control and Prevention (CDC) from 1995 to 1997, the combined annual rate of fatality and disability ranged from an estimated 18.7 per 100,000 population in Massachusetts to 80.6 per 100,000 in Wyoming (CDC, 2004). There are few states whose rates are lower than 45 per 100,000 population; most are higher. It helps to put these statistics into perspective. While not a direct comparison (the above statistics include fatalities and disability), breast cancer results in approximately 28 deaths per year per 100,000 population (Healthy People 2010, 2004), and HIV/AIDS results in approximately 6 deaths per year per 100,000 population (CDC, 2003a).

When one considers the bigger picture, the rate of TBI is incomprehensible. For example, those whose injury is severe reflect an estimated 10% of all TBIs per year; the remaining 90% have mild or moderate TBIs (Lezak, 1995) and are not included in the estimated rate per 100,000 quoted above. These individuals may be able to return to previous activities, although many will have persistent problems or deficits (e.g., changes in mood, personality, memory, speed of processing, initiation, etc.) that may or may not be recognized as having been caused by the injury. The bigger picture? -- The average annual estimate of new TBIs treated in the U.S. (mild, moderate and severe) equals 444 per 100,000 persons (Jager, Weiss, Coben, & Pepe, 2000)!

One final word to clarify the above incidence rates. These statistics reflect a diagnosis of TBI only and do not include brain injury due to other causes such as vascular disruption/stroke (the second most common cause of acquired brain injury), anoxia (lack of oxygen -e.g., near drowning), infectious diseases, brain tumor, toxic exposure, intracranial surgery, etc. When the incidence rates from other causes of brain injury are included, one cannot help but recognize the seriousness of the problem.

Definitions of Brain Injury and Eligibility

Michael was a bright, good-natured 12 year-old. He made good grades in school and was well-liked by his friends. With no apparent cause, he began to experience severe headaches. Since Michael was not one to complain readily, his parents took him to the ER when the headaches did not go away. He was evaluated and sent home with Tylenol. His headaches persisted the following day and his parents took him back to the ER. Again, he was sent home with no apparent findings. The next day, while his parents were at work, his headaches became unbearable. This resourceful 12 year-old boy made the call to 911 and then he lost consciousness.

The headaches Michael was experiencing were caused by an infection in the brain that resulted in brain injury. While his physical deficits were minimal (mild, left-sided weakness) and he retained his affinity for academics, he required 24-hour supervision due to severe behavioral problems (impulsivity, disinhibition, mood swings, problems with judgment, etc.). These problems would most likely persist for years to come, if not for the rest of his life. Michael’s insurance did not cover services after discharge from the hospital. In most states, he would not be eligible for services specific to TBI (with the exception of special education services provided during his school-age years), even though his deficits were not unlike problems that might be experienced by an individual with a TBI.

A TBI-based definition of brain injury is limited to injury caused by trauma/external physical forces. An acquired brain injury includes TBI, as well as internal events, such as anoxia, strokes, infectious diseases, metabolic disorders, toxic exposure, and other causes (Brain Injury Association of America, n.d.). Definitions of brain injury in most states exclude trauma to the brain during the birth process (e.g., use of forceps, vacuum extraction). Brain injury due to any cause before and during the birth process is generally classified as a congenital or developmental disability.

Definitions of brain injury in terms of eligibility for services typically describe an injury to the brain caused by trauma. Some may question the logic of separating brain injury by cause, particularly when the services needed by individuals with brain injury may be similar, regardless of cause (or whether it occurred during or after the birth process). Conversely, others argue that there is a good reason for making this distinction in light of the significant needs of individuals with TBI relative to available funding for services. For example, in comparison, federal and state funding for congenital or developmental
disability is much higher.

The Individuals with Disabilities Education Act (IDEA) (which provides special education services for school-aged children), the TBI Act, and the Health Resources & Services Administration/Maternal & Child Health Bureau (HRSA/MCHB) Federal TBI Program Grant Guidance use a definition of trauma to the brain from an external force and incidence/prevalence data is collected accordingly (Connors, King, & Vaughn, 2003b). According to a study conducted by Connors and colleagues (2003b), TBI-based definitions are used in regard to eligibility for services in Washington D.C. and 31 states (AL, AK, AR, CA, FL, GA, HI, ID, IA, KS, LA, ME, MA, MI, MS, MO, NV, NM, NC, ND, OK, OR, PA, RI, SC, TX, VT, VA, WA, WI). Nineteen states either use the broader definition of acquired brain injury or both ABI and TBI (AZ, CO, CT, DE, IL, IN, KY, MD, MN, MT, NE, NH, NJ, NY, OH, TN, UT, WV, WY).

It should be noted that the definition of brain injury as found in the Rehab-
ilitation Act for vocational rehabilitation eligibility is quite broad. It includes any disability that results in serious limitations in functional capacity/need for vocational rehabilitation, which may be the result of various causes (Connors et al., 2003b).

Funding Sources

Many people who sustain a TBI have private health insurance that covers the cost of medical care during the acute stage of recovery. However, most insurance policies have a limit to the amount that will be paid for rehabilitation or a time limit for payment of services (e.g., 90 days from the date of the injury). Currently, there is no cure for brain injury and the gains that are made take place over the course of months and years, even for a moderately severe injury. Consequently, most individuals with brain injuries will find themselves lacking support for needed services within a very short time.

There are several sources of public funding for brain injury services and supports, some of which are joint federal and state sources, while others are provided by the individual state. The reader is encouraged to reference “Plain Talk: An Overview of Public Funding for Brain Injury” in this issue of Premier Outlook, or visit the National Association of State Head Injury Administrator’s website at [http://www.nashia.org/resfundstream.htm] for a detailed description of how various programs are funded, as well as eligibility requirements.

Services and Support
It is important for professionals to learn about the options for services in their state and be resourceful and tenacious in trying to help individuals navigate those options. Unfortunately, many individuals are discharged from the hospital with inadequate information and family members are left to navigate the maze of information alone, along with the burden of providing daily care. Hopefully the following information will assist in this challenging effort.

Information

Most people know where to go for help in their community if they need repairs to their car or if their home air conditioning or heating system goes “on the blink.” When a person with a brain injury is discharged from the hospital or rehabilitation facility, many family members may be unaware that their loved one will need help for months and possibly years to come (he/she was well enough to be discharged from the hospital, after all!) or where to go to find it. During this period, one of the most critical needs of family members and caretakers involves information. The individual with a brain injury will continue to make relatively rapid gains in terms of cognition, emotional/behavioral functioning, and physical functioning for 1.5 to 2 years after the injury and many questions will need to be answered as these changes occur. Information is also required regarding where to go for supports and services. The final dilemma involves what to do when supports and services are not available in the area or when they are too costly for the length of time that they will be needed.

Many states have a process whereby information can be obtained (including referral for specific services). In most states, the state Brain Injury Association (BIA) serves as a good starting point for obtaining information. Contact information for each state’s BIA may be obtained from the Brain injury Association of America’s website at www.biausa.org (then go to “State Affiliates”). In some states, a hotline is provided and is staffed by individuals trained in assisting persons with brain injury and families. The staff members are available to respond to questions, provide information about available services (make referrals), and provide education and prevention programs.

Resource Facilitation/Service Coordination

A service that is growing in popularity, known as Resource Facilitation or Service Coordination, takes case-management to a new level. While case management has traditionally coordinated resources out of a hospital or other system (e.g., insurance company), resource facilitation programs are usually community-based (although information and emotional support is increasingly being offered through the telephone and electronic mail). The state’s Brain Injury Association is generally involved in developing and coordinating this process in conjunction with government agencies, non-profit organizations, and other providers (Connors, 2001). In addition to programs that are developed by the state BIA, according to Connors (2001, p. 11), “there are hundreds of resource facilitation-like initiatives based in hospitals and rehabilitation facilities and offered through community re-entry programs, law firms and by private case managers. Often friends, family members and others comprising the individual’s support network are called upon to act as facilitators.”

Many resource facilitation programs are open to all people who have had a brain injury, their families and others involved in their care, whether or not they are eligible for public services. If there is a resource facilitation program in the state, it is a good idea for the survivor or their family members/caretakers to contact the state BIA to guide them to their regional resource facilitator. The good news is that the resource facilitator may also
be attempting to locate the survivor. The reader is encouraged to contact the Brain Injury Association of America (www.biausa.org) for help in identifying contact information for their state BIA or alternative organization.

In many regions, there are resources, programs and volunteers, but there is frequently a lack of accessibility (sometimes due to a lack of knowledge about services on the part of the person with an injury or caregivers). When Resource Facilitation or Service Coordination is available, the facilitator serves as a proactive link between the person with an injury (and/or families) and providers of services. The facilitator may help with the application process and with finding natural supports (Connors, 2001). Typically, the facilitator will schedule a face-to-face interview to understand the person’s abilities, needs and wishes. A list of all services needed (whether they exist in the community or not) is compiled. The facilitator then helps locate the information, services and supports. Through this process the facilitator can develop a regional directory or resource file (e.g., a list of publicly funded services, volunteer services and for-profit services) that can be referenced for others (Connors, 2001).

When there is only one option, or more often, when there appear to be no options, the facilitator must become creative and persistent in pursuit of the needed resource. In fact, part of the facilitator’s job is to actively seek new resources. The goal is to go into the community and discover specialized services, find natural supports, help develop new supports, or even leverage donated services (e.g., dental services, wheelchair repair, transportation, etc.)! For example, the individual’s and family members’ relationships with others in the community may prove to be a resource.

Established programs (e.g., Meals on Wheels) may be willing to expand their eligibility to individuals with brain injury. Additionally, as Connors (2001, p. 30) points out, “members of the community may be willing and able to get involved if asked. Facilitators know that people with disabilities want to give back to their communities. Rather than a donation, some facilitators have developed barter arrangements where, for example, the individual with a brain injury receives a weekly ride to the grocery store in exchange for exercising the neighbor’s dog.” Resource facilitators provide ongoing contact with individuals and families to make sure the services are meeting their needs. Generally, the facilitator does not close a participant file unless the individual dies or moves or the participant asks that the file be closed (Connors, 2001).

Finally, education and advocacy are important components of the facilitator’s job. Education is important for the survivor and his/her support system, as mentioned. However, education is also important for the broader community in order to increase
awareness and to foster relationships for support (Connors, 2001).

Services

Individuals with brain injury have varying needs depending upon the specific consequences of the injury. The types of services that may be needed are described below. The availability, means of delivering, and the way these services are funded varies significantly from one state to another. The National Association of State Head Injury Administrators (NASHIA) (NASHIA, personal communication, December, 2004) has detailed the services that are provided in each state, as well as the funding stream used to support those services (see attached table).

The following description of services
is a summary of information compiled by Connors, King & Vaughn (2003d).

Assessment/Evaluation—Assessment to determine 1) nature of injury, 2) deficits resulting from the injury that effect functioning, 3) strengths and abilities, 4) treatment needs, 5) prognosis for employment or other activities, and 6) needs for life-long care.

Assisted Living—Congregate residential care (individual/shared rooms or apartments) with 24-hour care/supervision and healthcare assistance. Services are based upon individual needs.

Assistive Technology Devices—Any item or piece of equipment/system that is used to maintain or improve functional capabilities.

Behavioral Programs/Services—Individually designed strategy to improve adaptive behavior and to decrease behavior that interferes with the individual’s ability to function in the community. Includes training/supervision of caregivers and others and monitoring of continued effectiveness. Provided in residential or rehabilitation programs.

Case Management/Service Coordination—Service that may include 1) information, education, and referral; 2) assessment of needs/goals; 3) identification of programs, services, and funding options; 4) coordination and monitoring of services; 5) ongoing evaluation of needs; and 6) advocacy.

Community and Family Education—Training and education for family/caregivers about treatment/rehabilitation regimen, as well as use of adaptive equipment. May include instruction, behavioral intervention strategies, community integration and stress
management.

Companion/Homemaker Services—Non-medical assistance and socialization services by trained provider to help the individual maintain community living. Services are generally provided when the primary caretaker is temporarily absent or unable to manage the home and care without additional help. May include assistance with daily activities, arranging transportation, provision of emotional support and social stimulation, monitoring for safety/well-being, meal preparation, laundry and shopping, light housekeeping and accompanying the individual into the community.

Facility-Based Rehabilitation-Acute—Rehabilitation provided in the hospital to optimize medical condition and improve functional status (e.g., bowel and bladder control, communication, mobility, hygiene, orientation and learning). Services provided by
physicians, nurses and therapists.

Facility-Based Rehabilitation-Post Acute—Rehabilitation services provided by interdisciplinary team to assist the individual in community reintegration, once medically stable. May be provided for three to six months and may include cognitive rehabilitation, behavior management, development of coping skills and compensatory strategies.

Facility-Based Subacute Care—Residential program in a hospital or skilled nursing facility focusing on comprehensive medical/nursing care, rehabilitation, and therapeutic activities to individuals who are medically stable and/or who have complex nursing needs (e.g., those who are ventilator dependent or who require tube feeding). It should be noted that some providers are beginning to offer these services in a non-institutional setting (Lopez & Stewart, 2004).

Day Services-Medical Model—Outpatient program providing therapeutic interventions and supervised activities to facilitate community integration. May assist with psychological and behavioral adjustment, functional skills and vocational rehabilitation. May include nursing support for administration of medication.

Day Services-Social Model—Group, community-based outpatient program to address community living skills. Designed for adults who are not employed full time, providing health, social, recreational, and therapeutic activities with supervision, support and personal care.

Environmental Modification—Physical adaptations to an individual’s home (e.g., ramps, grab-bars, widening of doorways) for health, welfare and safety; to improve level of independence at home or to accommodate medical equipment and supplies.

Housing Supplements/Subsidies—Financial assistance (for individuals or families) to supplement the costs of living in one’s own home or apartment (e.g., money for rent or mortgage, deposits, utilities, housing maintenance).

Independent Living Skills Training—Training related to activities of daily living and maintenance of a household (e.g., personal care, household chores, menu planning, grocery shopping, cooking, budgeting, scheduling/appointments, public transportation). Training is provided in the home or a setting that resembles the home. Family training is also provided.

In-Home Nursing—Direct intervention or consultation by a home health care agency or individually by a licensed nurse addressing medication management, nutrition and feeding, ventilator care, tracheotomy care and suctioning, bowel and bladder care, hygiene, assessing skin integrity and/or immobility management.

Long-Term Residential Services—Residential services provided in a nursing facility, residential care facility, group home or apartments for individuals who are unable to live independently in the community without supports.

Personal Care Assistance—Assistance with eating, bathing, dressing, personal hygiene, and activities of daily living, as well as meal preparation and routine household chores. Services may be provided by an individual or agency.

Personal Emergency Response System (PERS)—Electronic communications device that notifies others of a physical, emotional, or environmental emergency requiring immediate assistance. A personal “help” button may be worn or carried by the subscriber.

Pre-Vocational Services—Services focusing on work skills including compliance, attendance, task completion, problem solving and safety. May also target production rate, inappropriate social behavior or fatigue. Work experience is provided in a facility-based or community work setting.

Recreation—Opportunities for individuals with brain injury to participate in social and recreational activities and to build skills in this area.

Respite Services—Temporary relief for emergency situations (e.g., family member’s need for hospital care) or from the ongoing responsibilities of caregiving by the family or other
primary caregiver.

Specialized Medical Equipment & Supplies—Items that are of direct medical benefit.

Support Groups—Groups that help individuals, family members and friends cope with and become more educated about brain injury. Provide emotional support, information/resources and opportunities to network and learn how others may have handled a situation.

Supported Employment—Training, placement and follow-up (“extended services”) required to ensure the individual remains employed. Provide supervision and training in a work setting (competitive or non-competitive). State Vocational Rehabilitation Agencies provide services for a limited time period. Once this period has ended “extended services” may be provided by other state agencies, nonprofit organizations or other sources.

Substance Abuse Services—Services provided to help the individual control substance abuse. Follow-up services may be provided.

Individual Therapy-Alternative—Alternative or complementary therapies outside the field of traditional Western medicine including yoga, tai chi, acupressure, acupuncture, therapeutic massage, meditation, biofeedback and homeopathic treatment.

Individual Therapy-Cognitive—Therapy to address the management of problems in perception, memory and problem-solving in order to increase functional level in real-world situations.

Individual Therapy-Occupational—Therapy provided by a qualified occupational therapist. The service typically targets upper extremities (arms and hands) motor dysfunction and cognitive problems that interfere with performance of activities of daily living.

Individual Therapy-Physical—Therapy provided by a qualified physical therapist. Treatment programs are designed to restore functional movement, relieve pain, promote healing and recovery, and adapt to permanent disability (when necessary).

Individual Therapy-Speech, Hearing & Language—Therapy provided by a qualified speech therapist/pathologist to maximize language, pragmatics (the meaning of communication in terms of context/intention) and cognitive skills.

Transportation Services—Services to get to and from programs, to conduct business, errands, and essential shopping, and to get to socialization activities, appointments and other necessary care. May be provided by a program, an authorized transportation service or through financial reimbursement (for cab or of family member, care provider or non-professional).

Vehicle Modification—Modifications (e.g., wheelchair lifts, adapted seating, hand controlled gears) to allow for one to transport oneself or for family/caregivers to transport the individual.

Vocational Services—Services may include vocational evaluation, occupational skill training, job counseling, medical and therapeutic services, assistive technology, work adjustment, job training, job placement, job coaching, sheltered and/or supported employment and job clubs. Provided by community vocational agencies or other professionals involved in vocational training.

Advisory Boards/Councils
In most states, there is an advisory board/council for brain injury, which serves to promote collaboration between state agencies that may currently or potentially provide support for brain injury (e.g., Medicaid, insurance, special education, vocational rehabilitation, health, mental health, public safety, etc.). Advisory councils also promote citizen participation in policy formulation and program implementation (Vaughn & King, 2001).

The activities of advisory boards may include Trust Fund distribution, Medicaid Waiver applications, and statewide program operations. Additionally, involvement may include needs assessment and planning (e.g., how many are in need of which services vs. which services are available), collaboration (e.g., coordinating collaborative efforts between state support programs) and education and advocacy activities. Some advisory boards/councils participate in funding decisions, some in long-term service and support matters or medical/rehabilitation concerns, and others are involved in prevention activities (Connors, King, & Vaughn, 2003a).

Surveillance
The CDC began promoting the development of a traumatic brain injury surveillance system in 1989. “The surveillance system's function has been to characterize the risk factors, incidence, external causes, severity and outcomes of traumatic brain injury in the population” (CDC, 2003b). An accurate accounting of the magnitude of the problem is essential in planning for service needs, particularly in regard to Medicaid and other state social services. Additionally, an accurate accounting is important “(1) to develop injury control and prevention strategies; (2) as a base for further injury research; (3) as a mechanism for service referral; and/or (4) as an eligibility criterion for program participation” (Brain Injury Association of America, 2000). In most states, this accounting has been haphazard, at best. The problem stems, in part, from the fact that reporting requirements for providers has varied in terms of the
specific information required. For example, hospitals may not be required by the state to supply adequate information, if known, such as name and address, details on cause of injury and patient disposition/discharge information. The information (history of TBI) may not
be included on intake forms for state programs or there may be no screening process in programs or agencies to identify people with TBI (Brain Injury Association of America, 2000).

Although some state-based TBI surveillance systems have access to the names and addresses and the legal authority to contact state residents hospitalized with a TBI, such access is not a requirement for surveillance. Instead, many states have developed a registry for individuals with TBI and their families. Registries are used to gather data on brain injury incidence and cause and demographic characteristics of persons with injuries, and typically include identifying and contact information. However, in many cases efforts to develop registries have been undermined due to the failure of EMS and trauma centers to report this information because of patient privacy laws. In some states, there are strict laws regarding patient confidentiality. Recent passage of the Health Insurance Portability and Accountability Act (HIPAA), which increased the pro- tection of information from medical records, also may limit the potential for establishment of new registries. In some states, public hearings have been necessary in order to change state laws so that survivors and their families could be contacted for inclusion in the registry. Since the hearings are a lengthy process, many states have opted to distribute a self-mailer brochure for individuals and family members to self-identify. There have been questions about the reliability of registry data due to problems with reporting requirements, having too few staff assigned to data compilation and analysis, and the resulting lack of completeness of the information collected (Brain Injury Association of America, 2000).

Lead Agencies
In seeking services and supports for brain injury, knowing which state department or agency to call can save considerable time and effort. In many states, there is a lead agency responsible for coordinating brain injury services. The services themselves may be provided by the lead agency or through other state programs (which is most often the case). According to a NASHIA report, there is a lead agency for brain injury in 48 states. The public health department is the lead agency in some states, the human or social services department is the lead agency in others, and in four states, the lead agency is the rehabilitation department or commission (Connors, King, & Vaughn, 2003c).
A listing of state lead agencies along with contact information is shown in the chart below. Additionally, the reader may visit the NASHIA “Resource Center” (then go to “State Infrastructure/Service Delivery”) at www.nashia.org, for a listing of the lead agency(ies) for brain injury in each state.

STATE LEAD AGENCIES

Alabama - Department of Rehabilitative Services

Alaska - Department of Health and Social Services, Division of Mental Health & Developmental Disabilities

Arkansas - Department of Health, Family Health Division, Injury Prevention Program

Arizona - Department of Economic Security, Division of Employment & Rehabilitation Services, Rehabilitation Services Administration, Governor’s Council on Head and Spinal Injuries

California - Department of Mental Health, Systems of Care Division, Programs Support Branch, Special Populations

Colorado - Department of Human Services, Office of Behavioral Health and Housing

Connecticut - Department of Social Services, Bureau of Rehabilitation Services

Delaware - Department of Health & Social Services, Division of Services for Aging and Adults with Physical Disabilities

Washington, DC - Department of Health

Florida - Department of Health, Division of EMS and Community Health Resources,
Brain & Spinal Cord Injury Program

Georgia - Department of Community Health, Division of Medical Assistance

Hawaii - Department of Health, Developmental Disabilities Division

Idaho - Department of Health & Welfare, Division of Family & Community Services, Bureau of Developmental Disabilities

Illinois - Department of Human Services, Office of Rehabilitation Services

Indiana - none designated

Iowa - Department of Public Health, Division of Health Promotion, Prevention,
& Addictive Behaviors, Bureau of Health Promotion and Disability

Kansas - Department of Social & Rehabilitation Services, Health Care
Policy/Community Supports & Services

Kentucky - Cabinet for Health Services, Department for Mental Health & Mental
Retardation Services, Division of Mental Health, Brain Injury Services Unit

Louisiana - Department of Social Services, Rehabilitation Services, Traumatic Head and
Spinal Cord Injury Trust Fund Program

Maine - none designated

Maryland - Department of Health and Mental Hygiene, Mental Hygiene Administration

Massachusetts - Department of Health and Human Services, Massachusetts Rehabilitation Commission

Michigan - Department of Community Health, Division of Long Term Care

Minnesota - Department of Human Services

Mississippi - Department of Rehabilitation Services, Division of Special Disabilities,
TBI/SCI Program

Missouri – Department of Health and Senior Services, Division of Head Injury

Montana – Department of Public Health & Human Services, Senior and Long Term Care Division

Nebraska - Department of Education, Special Population’s Office

Nevada - Department of Employment, Training and Rehabilitation, Office of Community Based Services

New Hampshire - Department of Health and Human Services, Division of Developmental Services

New Jersey - Department of Human Services

New Mexico - Department of Health, Long Term Service Division, TBI Program

New York - Department of Health, Division of Home and Community Based Care

North Carolina - Department of Health and Human Services, Division of Mental
Health/Developmental Disabilities/Substance Abuse Services

North Dakota - Department of Human Services, Aging Services Division

Ohio - Rehabilitation Services Commission

Oklahoma - Department of Health, Injury Prevention Service

Oregon - Department of Education, Office of Special Education

Pennsylvania - Department of Health

Rhode Island - Department of Human Services

South Carolina - Department of Disabilities and Special Needs, Head and Spinal Cord Injury Division

Tennessee - Department of Health, Health Services Administration Bureau, Health Services Medical Section, TBI Program

Texas - Department of Assistive and Rehabilitative Services, Health and Human Services Commission

Utah - Department of Human Services, Division of Services, Division of Services for People with Disabilities

Vermont - Agency on Human Services, Department of Aging and Disability, Division of Vocational Rehabilitation, TBI Program

Virginia - Secretariat of Health and Human Services, Department of
Rehabilitative Services

Washington - Department of Social and Health Services, Aging and Adult Services Administration, Home and Community Services Division

West Virginia - Department of Education and the Arts, Division of Rehabilitation Services

Wisconsin - Department of Health and Family Services, Division of Supported
Living, Bureau of Developmental Disability Services

Wyoming - Department of Health, Division of Developmental Disabilities,
Acquired Brain Injury Home and Community Based Waiver

Lead agencies references

From “Lead Agencies,” by S. H. Connors, A. King and S. L. Vaughn, 2003, Guide to State Government Brain Injury Policies, Funding, and Services, p. 50-53. Published by the National Association of State Head Injury Administrators. Adapted with permission of the author.

Research and publication of the Guide to State Government Brain Injury Policies, Funding and Services was supported under a Partnership for Information and Communication cooperative agreement (No. U93 MC00158-01) with the Department of Health and Human Services (DHHS) Health Resources and Services Administration's Maternal and Child Health Bureau.

Conclusion

It is hoped that this article builds awareness in regard to available state services for brain injury. Many dedicated advocates have worked tirelessly to educate and inform communities and policymakers in order to develop public support programs for brain injury. Unfortunately, the needs that are addressed through the current system represent only the tip of the iceberg. It may be illogical to assume that there is enough public revenue to support everyone with a brain injury, no matter what the cause or the length of time that services are needed. However, the gross inadequacies of public support
for brain injury are not experienced by many disability groups. Clearly, continued advocacy and education is needed to build support programs for brain injury, as well as to support prevention efforts.

References

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Centers for Disease Control and Prevention, National Center for HIV, STD, and TB Prevention, Divisions of HIV/AIDS Prevention (2003a). Trends in age-adjusted
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Connors, S. H., King, A., & Vaughn, S. L. (2003a). Guide to state government brain injury policies, funding, and services: Advisory boards/councils. Retrieved July, 2004, from National Association of State Head Injury Administrators Web site: http://www.nashia.org/pdocfiles/RC/advisory%20boards%20councils.pdf

Connors, S. H., King, A., & Vaughn, S. L. (2003b). Guide to state government brain injury policies, funding, and services: Definitions. Retrieved September, 2004,
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from National Association of State Head Injury Administrators Web site http://www.nashia.org/pdocfiles/RC/lead%20agencies.pdf

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