Plain Talk: An Overview of Public Funding for Brain Injury
Nicole Crow
Robert Pierce, CBIS
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In the United States, 1.5 to 2 million traumatic brain injuries (TBIs) are acquired each year. The three leading causes of TBI are automobile accidents, falls, and acts of violence. Each year, about 70,000 to 90,000 of those persons who acquire a TBI have an injury so severe that it causes permanent, debilitating loss of functioning (Starr, 2000). Acute hospital care costs thousands of dollars, but it is post-acute rehabilitation that costs even more in most cases.

If you have commercial insurance you will probably receive benefits for initial medical costs after TBI, but most private insurance plans have spending caps, or they provide limited funding for post-acute rehabilitation. There may be no coverage for the long-term care services that are often needed after a severe brain injury, and individuals can quickly exhaust personal resources (Starr, Terrill, & King, 2001). While brain injury resources in the public sector (provided by the government) are limited relative to the needs of the large population of individuals disabled by brain injury, there may be options that you were not aware of.

Financial assistance of various types is available in every state. Although research is required to find what benefits you may qualify for in your home state, this article should assist you identifying options that may be available to you. There are four main sources of financial support for services provided to individuals with TBI: Medicaid and Medicaid waivers, Vocational Rehabilitation (VR) and Independent Living Services (ILS), Trust Funds, and State and Federal Grants (Starr, 2000; Starr et al., 2001).

Additional resources, including educational supports and services, are made available to school-aged children with TBI under the Individuals with Disabilities Education Act (IDEA); however, a detailed discussion of IDEA is beyond the scope of this article.
The reader is encouraged to reference previous issues of Premier Outlook (e.g., Volume 4, Issue 1; Volume 3, Issue 3) [www.premier-outlook.com] for more information about these services.

Medicaid
In 1965, the Medicaid program was implemented and funded with joint contributions from state and federal monies. Medicaid is the nation’s major public financing program that helps many people with low-income pay for some or all of their medical bills. It currently provides medical and health-related services to five broad categories of
people: pregnant women, children and teenagers, and persons who are over 65, blind, or disabled. Medicaid is a state-administered program and each state sets its own guidelines regarding eligibility and services. The amount that each state receives from the federal government varies based on the state’s per capita income. These federal funds cover between 50 percent to 83 percent of the cost of services provided (Connors, King, & Vaughn, 2003b).

The Medicaid program covers a wide range of services that states are either required to provide or are optional. Federally required services include:

• Inpatient and outpatient hospital

• Physician, midwife, and certified nurse practitioner

• Laboratory and X-ray

• Nursing home and home health care

• Early and periodic screening, diagnosis, and treatment (EPSDT) for children under age 21

• Family planning

• Rural health clinics/federally qualified health centers

States are given the option to provide other specified services and still receive federal matching funds. Some examples of these optional services are prescription medications, clinical services, prosthetic devices, durable medical equipment, medical supplies, hearing aids, dental care, and intermediate care facilities for individuals who are mentally retarded (Starr, 2000).

In their regular Medicaid program, states may include a package of services specifically for adults with TBI. Programs have included neuropsychological, psychological, vocational and recreational services, and physical, occupational and speech therapies (Starr, 2000). A state may add categories of eligibility for which adults with TBI may qualify under Mental Retardation/Developmental Disability (MR/DD) Home- and Community-Based Waivers.

Medicaid Waivers

One major component of the Medicaid program is long-term care. Initially, Medicaid only covered long-term care services within the institutional setting. Currently, institutional services make up over three-fourths of Medicaid spending for long-term care (Starr, 2000). In 1981, the Health Care Financing Administration (HCFA) issued rules which allowed states to develop “waivers” of the Medicaid requirements that limited long-term services to an institutional setting. This resulted in Home- and Community-Based Services (HCBS) Waiver programs. The aim of the waiver programs is to offer people with serious disabilities the opportunity to live in a community setting instead of in an institutional setting, while maintaining cost neutrality. Cost neutrality refers to providing services at a cost lower or equal to the cost of providing the service in an institution (Spearman, Stamm, Rosen, Kayala, Zillinger, Breese, & Wargo, 2001).

Federal guidelines for the waiver program are relatively broad, allowing states considerable flexibility in implementing the program. The federal government has listed seven specific services that can be provided by the waivers: 1) case management, 2) homemaker services, 3) home health aid, 4) personal care services, 5) adult day health, 6) respite, and 7) habilitation services. These services are often needed by individuals and families that are affected by traumatic brain injury (Starr, 2000).

In addition to the service options identified by the federal government, HCBS Waivers give states the flexibility to target specific age groups, geographic areas functional abilities or diagnostic categories and to select services to best meet the needs of the particular population. States establish their own eligibility requirements, duration and scope of services, and payment rates for services. For example, under TBI Waivers, many states have opted to provide behavior modification, supported employment, cognitive rehabilitation, assistive technology, independent life skills training, specialized medical equipment, alternative residential settings, mental health services, transportation, and environmental modifications (Connors et al., 2003b; Starr, 2000; Starr et al., 2001).

Currently, 47 states use some type of Medicaid Waiver for individuals with brain injury. As of September, 2004, 26 states had implemented a specific TBI Waiver to provide services for Medicaid beneficiaries with TBI (Connors et al., 2003b).

From “What Funding Sources Exist to Provide Services for People with Traumatic Brain Injury?,” by J. Starr, C. F. Terrill and M. King, Funding Traumatic Brain Injury Services. Copyright 2001 by the National Conference of State Legislatures. Adapted with permission of the author. Updated NASHIA, personal communication, September 2004.

The focus of most TBI Waivers is to provide rehabilitation or long-term support. Rehabilitative waivers usually cover services provided during the acute stage of recovery, are time-limited, and are aimed at substituting for, or decreasing, the length of stay in a hospital rehabilitation facility. Long-term Support Waivers, which are more abundant, are focused on post-rehabilitative care and are usually an alternative to nursing home care (Spearman et al., 2001).

Vocational Rehabilitation
(VR) and Independent Living Services (ILS)

Vocational Rehabilitation (VR) and Independent Living Services (ILS) programs provide a variety of services and job training to adults with disabilities, including adults with brain injury, for the purpose of supporting re-entry into the community. The Rehabilitation Act of 1973 authorized both VR and ILS programs with financing by a combination of state and federal funds. To be eligible for services from a state VR agency or ILS center, a person must have a physical or mental impairment that is a substantial impediment to employment (Starr, 2000; Starr et al., 2001).

VR services provide preparation and support for transition to employment. For eligibility, the individual must have a disability that can be documented and that impedes employment, but does not preclude ability to work. A person must also be able to benefit from VR services in terms of employment and must require VR services to prepare for, enter, engage in, or retain employment. VR services include rehabilitative therapies, such as occupational, speech, cognitive, behavioral, or physical therapy, as well as supported-employment services, such as job coaching and on-the-job training. VR services generally extend support for a maximum of 18 months, after which
states must find alternative funding sources or discontinue the services (Connors, King, & Vaughn, 2003d; Starr, 2000; Starr et al., 2001).

Independent Living Centers aim to ensure that the individual with a disability is safely maintained in his/her home setting. As the individual’s level of functioning increases or decreases, the level of service is modified accordingly. Independent Living Skills (ILS) Centers provide four main services: 1) independent living skills training, 2) peer support, 3) advocacy, and 4) referral. These services may include support for activities of daily living, counseling, money management, and health-related services. There are about 660 ILS centers operating around the country and about 45,000 people are served each month at these centers. The individual centers have the option to purchase outside services for the participants in their programs. Thus, the services provided by ILS centers vary greatly between states and within states (Starr, 2000; Starr et al., 2001).

General Funds and Trust Funds

Not all individuals with TBI who need services qualify for federal programs, such as Medicaid because of diagnosis or financial resources. In addition, some states do not have programs designed for persons with TBI. Because of the problems that individuals with TBI often experience in obtaining services, many states have developed specific
programs to meet this need. Examples of state-initiated and funded TBI
projects are as follows (Starr, 2000):

• Head injury task forces involved in planning and service development

• Head injury registries and prevention/injury control programs

• Case management and service coordination systems specifically designed for people with TBI

• Expanded developmental disabilities systems to include TBI

• Enhanced educational opportunities for people with TBI

Funding for state programs and services is most often derived from the state’s General Funds or special Trust Funds. State General Funds are funds for which the dollars are not designated, or earmarked specifically for TBI services by statute (law). This means that the funds can be used for purposes other than TBI programs. Case management is frequently the main component of these programs. “Trust Funds are special accounts in the Treasury that receive earmarked taxes or other kinds of revenue collections…and from which payments are made for special purposes or to recipients who meet the requirements of the trust funds as established by law” (U.S. House, n.d.). While there are many kinds of trust funds, some are designated specifically for brain injury services. Services covered under a trust for brain injury may include: acute care, inpatient and outpatient rehabilitation, transitional living services, consumer and family support, outreach, case management, adaptive equipment, home and vehicle modifications, respite care, and support for prevention and TBI registries. These funds assist with some of the related costs of TBI, but not funding of long-term services. Trusts are also limited by caps on funds given to each individual. These caps can be either annual or lifetime, depending on the nature of the trust and the individual who receives the funds (Connors, King, & Vaughn, 2003c; Starr, 2000; Starr et al., 2001).

Revenue for trust funds are frequently obtained from a percentage of civil penalties on speeding or moving violations, reckless driving, or driving under the influence and fees from driver’s license renewal, temporary auto tag, and firearm registration (Connors et al., 2003c). Trust funds are influenced by several factors: “population size, amount and number of fines, length of time of operation, and, in some cases, the extent to which the judicial system is willing to enforce penalties” (Vaughn & King, 2001, p. 22).

The lead agency that is responsible for administering trust funds differs from state to state, and in some states more than one department or division share responsibilities. In most states, the Department of Health, Human Services, Labor, or Mental Health monitors the state-funded services. Under each of these departments the Divisions of Mental Retardation and Developmental Disabilities, Vocational Rehabilitation, and Bureau of Special Health Care Needs, to name a few, may also be involved in administering funds (Vaughn & King, 2001).

Eligibility

To establish eligibility for services,
most states use a TBI-based definition of brain injury (injuries caused by external physical forces). Some states may include anoxia, but only if it is related to a TBI. Other states may include anoxia if it is a result of a drowning accident, but it is excluded if it is the result of a drug overdose. “However, all states surveyed specifically exclude individuals disabled as the result of a stroke or aneurysm” (Vaughn & King, 2001,
p. 24). Additionally, most states exclude the diagnosis of brain injury if it is associated with trauma at birth/birth defects or a chronic, degenerative condition. Clearly, each state’s criterion varies in regard to eligibility for services depending upon the etiology (cause) of brain injury. It is important to research the eligibility requirements specific to your state (Vaughn & King, 2001).

State and Federal Grants
TBI Act of 1996

The TBI Act is the single piece of federal legislation passed to specifically address the needs of people with TBI. It was reauthorized by Congress in 2000 and will be reviewed again for reauthorization in the spring of 2005. While the TBI Act does not provide revenue for direct care support to individuals with TBI, it enables states to develop a plan and mechanism with which to make services accessible (Starr et al., 2001).

This Act authorizes the Centers for Disease Control and Prevention to establish prevention programs and the National Institutes of Health to research more effective diagnostic and intervention methods (Starr et al., 2001). Furthermore, “the Traumatic Brain Injury Act of 1996 authorized the Health Resources and Services Administration’s (HRSA’s) Maternal and Child Health Bureau to establish a program to assist states in improving access to health and other services for individuals with traumatic brain injury and their families. The bureau also funds the TBI Technical Assistance Center
[see www.tbitac.org] to assist states with service systems and the TBI State Grant Program” (Starr et al., 2001 p. 13).

TBI state grants provide funds for the implementation of statewide structures that ensure access to comprehensive and coordinated TBI services. These projects are implemented with input from consumers, professionals, state agencies, and organizations (Starr et al., 2001).

State Planning and Implementation Grants
State Planning Grants are used to establish a structure needed to develop an implementation plan.

The components of State Planning Grants are as follows:

• A statewide TBI advisory board;

• A designated state agency and staff position responsible for TBI activities;

• A statewide needs and resources assessment to address the full spectrum of services (from initial acute treatment through community reintegration) for individuals with traumatic brain injury; and

• A statewide action plan to develop a comprehensive, community-based system of care, encompassing physical, psychological, educational, vocational and social aspects of traumatic brain injury services and to address the needs of individuals with TBI and their families.

State Implementation Grants provide the resources for states to target the key priorities identified in their statewide action plans. A statewide system can be developed to ensure access to comprehensive and coordinated services
(Starr et al., 2001).

The Defense and Veterans Head Injury Program(DVHIP)

Established in 1992, the DVHIP represents collaboration among the Department of Defense, the Department of Veterans Affairs, and the Brain Injury Association of America, Inc. The goal of the DVHIP is to support military personnel and veterans with TBI and spinal cord injuries and ensure that they receive the TBI-specific evaluations, treatment, and follow-up that is necessary. The program also collects and compiles
standardized outcome data on various brain injury treatments and rehabilitative strategies.

The DVHIP program components include:

• A TBI registry and evaluation system to help identify military personnel and veterans with traumatic brain injuries;

• A TBI Patient Care Network that provides services (e.g., acute care and long-term community transitional services) at 16 sites throughout the country;

• Seven primary TBI centers for TBI inpatient treatment and research;

• The Brain Injury Association of America, Inc., located in Alexandria, Virginia (Starr et al., 2001).

Federal Block Grants
In 1981, Congress passed the Omnibus Budget Reconciliation Act, which
combined several programs under block grants “to give states more flexibility in administering these programs, to end duplication, and to ensure better coordination among the programs” (Connors et al., 2003a, p. 89). Seven block grants were established. While the grants are provided at the federal level by the U.S. Department of Health and Human Services, the services are actually distributed by state agencies (e.g., health, social services, mental health, or substance abuse). Individuals with TBI
may be eligible for services from block grants (Connors et al., 2003a).

• Maternal and Child Health (MCH) Title V Block Grants – Aimed at improving health and welfare services for mothers and
children. The MCH program provides “preventative and child care services; comprehensive care, including long-term care services for children with special health-care needs and rehabilitation services for blind and disabled children under 16 years of age, who are eligible for Supplemental Security Income” (Connors et al., 2003a, p. 90). Services may include: transportation, translation, outreach, respite care, family support, case management/care coordination, and coordination with Medicaid, especially the Early and Periodic Screening, Diagnosis and Treatment Program (EPSDT). Children with TBI may be eligible for services through the state’s special health care needs program.

• Preventative Health and Health Services Block Grants (PHHSBG) – Targeted at health issues such as: cardiovascular disease, cancer,
diabetes, emergency medical services, injury and violence, infectious
disease, environmental health, community fluoridation, and sex offenses. The funds are used to support clinical services, preventative screening, laboratory research, outbreak control, workforce training, public education, data surveillance, and program evaluation. Because of the flexibility in the allocation of funds, no two states allot their block grant resources the same way or in the same amounts. PHHSBG funds may be used for programs to help prevent brain and spinal cord injuries and to support the state injury prevention planning efforts.

• Substance Abuse Prevention and Treatment (SAPT) Block Grants – States are required to use certain amounts of this grant to provide
primary prevention, HIV Early Intervention Services, and services to pregnant women and women with dependent children. However, the grant funds cannot be used for inpatient treatment. People with TBI may be eligible for substance abuse services through the state substance abuse program.

• Community Mental Health Services Block Grants –
Aimed at helping states improve and increase the quality and range of their treatment, rehabilitation, and support services for people with mental illness, their families, and communities. Additionally, a range of programs may be available to address mental, emotional, and behavioral problems among children.

• Social Service Block Grants (SSBG) or Title XX Grants – Targeted at helping states achieve social policy goals, such as:
preventing child abuse, increasing the availability of child care, and providing community-based care for the elderly and individuals with disabilities. The SSBG funds are intended to assist individuals in achieving economic self-support or self-efficiency; preventing or remedying neglect, abuse, or exploitation of children and adults; preventing or reducing inappropriate institutionalization; and securing referral for institutional care. Individuals with TBI may be eligible for SSBG programs based on their disability and may qualify for in-home services and transportation assistance under this program.

• Temporary Assistance for Needy Families (TANF) –
The purpose of TANF funds is assisting needy families so that children can be cared for in their own homes; reducing dependency of needy parents by promoting job preparation, work, and marriage; preventing
out-of-wedlock pregnancies; and encouraging the formation and maintenance of two-parent families. Recipients must work as soon as they are able to work and within two years to qualify for
assistance.

• Workforce Investment Act of 1998–
This act consolidated several employment training programs into statewide systems of workforce development partnerships. The Act includes adult, youth, and dislocated worker programs, adult education, post-secondary vocational education, employment services, vocational rehabilitation, veterans program and TANF. Services are provided through a “work first” approach instead of the traditional approach of pre-employ- ment job and skill training. The main services provided include: job search and placement assistance (including career counseling); labor market information, which identifies job vacancies, skills needed for in- demand jobs, and local, regional and national employment trends; initial assessment of skills and needs; information about available services; and some follow-up services to help customers keep their jobs once they are placed (Connors et al., 2003a).

Additional Resources

In addition to the resources discussed previously, options for support may include: Medicare, Social Security Disability Insurance, Supplemental Security Income, and work incentives (Starr, 2000).

• Medicare is a Health Insurance Program for people 65 years of age and older, some people with disabilities under 65 years of age, and
people with end-stage renal disease (permanent kidney failure treated with dialysis or a transplant).

• Social Security Disability Insurance pays benefits to you and certain members of your family if you are "insured," meaning that you worked long enough and paid Social Security taxes. To qualify for benefits, you must first have worked in jobs covered by Social Security. Then
you must have a medical condition that meets Social Security's definition of disability.

• Supplemental Security Income is a Federal disability program that provides assistance to people with disabilities based on financial need. The monies are administered by the Social Security Administration and only individuals who have a disability and meet medical criteria may qualify for benefits under the program.

• Work Incentives - Special rules make it possible for people with
disabilities receiving Social Security or Supplemental Security Income (SSI) to work and still receive monthly payments and Medicare or Medicaid. Social Security calls these rules "work incentives.”

Conclusion

The TBI Act represents an important shift in the recognition of TBI, however, it is the only piece of federal legislation that specifically designates funds for TBI. These funds are not appropriated for direct care services. In contrast, federal programs have been implemented specifically for other disability groups and have allocated far more financial support (including support for direct care services).

“Although states administer a variety of programs offering financial assistance and services to individuals with disabilities, it has become apparent to many brain injury advocates that these programs do not always meet the specific rehabilitation, long-term care, and support needs of individuals with TBI and their families” (Vaughn, King, 2001, p. 20).

States have tried to address this problem by expanding their Medicaid services, eligibility criteria, and vocational rehabilitation programs. Given limited resources, it is a challenge for states to provide a consistent, coordinated and comprehensive community-based
program that addresses all of the areas of services needed by persons with TBI. However, with increasing awareness of treatment needs and consumer advocacy, options for persons with TBI are expanding (Spearman et al., 2001).

The inconsistency in services from state to state makes identifying funding resources a challenge for anyone. Finding funding for TBI services is a huge undertaking, requiring time and energy to find what is available.

A list of internet resources is provided to assist in this process (see Table 1).
A good starting point may be your state Brain Injury Association. Contact information may be obtained through the Brain Injury Association of America’s website (www.biausa.org). Also, the National Association of State Head Injury Administrators’ website provides useful information (www.nashia.org). This organization provides regularly updated information regarding individual state services and contact information.

References

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

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

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

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

Spearman, R.C., Stamm, B.H., Rosen, B.H., Kayala, D.E., Zillinger, M., Breese, P. & Wargo, L.M. (2001). The use of Medicaid waivers and their impact on services.
Journal of Head Trauma Rehabilitation, 16 (1), 47-60. Retrieved July, 2004, from www.nashia.org/art/Sperman.pdf

Starr, J. (2000, January). Public spending on traumatic brain injury (TBI): A Snapshot of FY 1998 in the USA. Alexandria, VA: Brain Injury Association, Inc.

Starr, J., Terrill, C.F., King, M. (2001, November). Funding Traumatic Brain Injury Services. Washington, DC: National Conference of State Legislatures

U.S. House of Representatives Committee on Rules (n.d.). Glossary of terms in the federal budget process. Retrieved September, 2004, from
http://www.house.gov/rules/glossary_fbp.htm

Vaughn, S.L. & King, A. ( 2001, February). A survey of state programs to finance rehabilitation and community services for individuals with brain injury. Retrieved July, 2004, from National Association of State Head Injury Administrators Web site: www.nashia.org

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