Traumatic Brain Injury: Programs Supporting Long-Term Services in Selected States
Released: 1998-02-27T00:00:00

Letter

Background

TBI is the injury most likely to result in death or permanent disability. Recent Centers for Disease Control and Prevention (CDC) data indicate that each year approximately 50,000 people die, 210,000 are hospitalized and survive, and 70,000 to 90,000 individuals are disabled due to a TBI. CDC cautions that these numbers underestimate the numbers of individuals sustaining a TBI because they exclude individuals seen in emergency departments or other outpatient settings but not admitted to the hospital. Other researchers estimate that for each person who dies of TBI, 5 people are hospitalized and 27 are examined in emergency rooms without overnight hospitalization.

Almost one-half of all TBIs result from transportation-related incidents. Most of the remainder result from falls, assaults, sports and recreation, and firearm-related injuries. Younger adults generally are more likely to be injured than older adults. Adult males sustain a TBI more than twice as frequently as women, and blacks are more likely than whites or Hispanics to sustain a TBI and to die from their injury. People at the lowest income levels are at the greatest risk of sustaining a TBI.

Adults with TBI frequently have difficulty with executive skills, such as managing time, money, and transportation. They also have difficulty with short-term memory, concentration, judgment, and organization, which are necessary to function independently in the community. Adults with TBI often have normal intelligence but are unable to transfer learning from one environment to another.

Both the private and public sectors finance acute care services to adults with TBI. When the individual progresses past the acute phase, private health insurance typically limits coverage of rehabilitation therapies and does not cover long-term care or community-based support services. As families exhaust their financial resources, the public sector pays for a greater share of the services received.

Medicaid, Vocational Rehabilitation, and ILS Programs Provide Services to Adults With TBI

Federal funding is available for medical and social support services under Medicaid, vocational rehabilitation services provided through state VR agencies, and for independent living services. (See app. III for a summary of the broad categories of services provided through these programs by at least one of the states we contacted.)

Medicaid provides health care for about 37 million disabled, blind, or elderly people and low-income families. At the state level, Medicaid operates as a health insurance program under a state plan covering both required and state-selected optional health care services. Generally, state plan benefits must be provided in the same amount, duration, and scope to all Medicaid beneficiaries. With the exception of nursing facility care, most services provided under the standard Medicaid program are medically oriented. Standard Medicaid programs generally do not provide many of the long-term community-based support services needed by many adults with TBI.

To provide long-term home and community-based services for broad groups of Medicaid beneficiaries—such as the elderly disabled or physically disabled, including adults with TBI—states generally have used 1915(c) waivers. There are currently over 200 home and community-based waiver programs serving more than 250,000 individuals nationwide. Under these waivers, states, with HCFA approval, can waive one or more of the requirements for statewideness, income and resource standards, comparability of services, and equal provision of services, as long as the average per capita cost of providing these services will not exceed the cost of institutional care. States select the services, the service definition, the target population, and the number of individuals included under each HCFA-approved home and community-based waiver. Examples of services that can be provided under these waivers are personal care, homemaker, and nonmedical transportation services.

Adults with TBI might benefit from some home and community-based services covered under broad-based waivers. However, these individuals often are unable to qualify for such services because the preadmission screening process may be oriented to physical rather than cognitive disabilities. For example, Colorado Medicaid reports that most adults with TBI are unlikely to qualify for the broad-based waiver for elderly and physically disabled individuals because the assessment weighs physical factors more heavily than cognitive factors. Pennsylvania has a home and community-based waiver for personal attendant services, but beneficiaries with cognitive impairment are excluded. In addition, home and community-based waivers targeted to individuals who are aged or physically disabled generally do not cover services needed by cognitively impaired individuals, such as cognitive rehabilitation.

States Target Medicaid Services to Small Groups of Adults With TBI

States generally use Medicaid home and community-based waivers to target Medicaid services to small groups of adults with TBI. Missouri, however, narrowly targets services from its standard Medicaid program to persons with TBI.

Home and community-based waivers can be used by states to target select services to smaller, more specific groups of individuals, such as adults with TBI. HCFA reports that, as of June 1997, a total of 15 states have applied for and received TBI waivers. These programs are small, covering an estimated 2,478 individuals and $118 million in expenditures in 1996.

Four of the states we contacted—Colorado, Minnesota, New Hampshire, and New Jersey—have TBI home and community-based waivers to compensate for the difficulty some adults with TBI experience in accessing services. In addition to services covered, the four waivers vary in terms of the target population, the number of individuals served, expenditures per individual, and the services covered. (See table 1.)

The TBI waivers for three of the four states—Minnesota, New Hampshire, and New Jersey—target people in nursing facilities and similar institutions or at risk of institutional placement. Many of these individuals will likely require home and community-based services like those covered by the waiver for the remainder of their lives. In contrast, Colorado’s waiver targets adults with TBI in the hospital who receive post-hospital waiver services so that they can be discharged more quickly. Colorado estimates that individuals will receive services under the TBI waiver for 2 years; after that time, they will receive, if necessary, services under the home and community-based waiver for the elderly, blind, and disabled, which covers a less intense level of services. Minnesota’s TBI waiver covers two levels of home and community-based care: (1) for individuals at risk of nursing home placement and (2) for individuals at risk of placement in neurobehavioral units in hospitals.

Some waiver services are covered by all four states: case management, personal care, respite care, environmental modifications, transportation, behavior modification programs, and day treatment or day care programs.Some type of alternative residential setting, cognitive rehabilitation, assistive technology, independent living training, specialized medical equipment and supplies, and mental health services are covered by three of the four states. Many of the services covered under the TBI waivers are similar to services required by other people with physical disabilities or chronic illnesses, such as personal care services or extended physical, occupational, and speech therapies. Some, however, are particularly useful to adults with TBI, such as cognitive rehabilitation or behavioral programming. (See app. IV for a comprehensive list of services covered under Colorado’s, Minnesota’s, New Hampshire’s, and New Jersey’s TBI waivers.)

Fewer than 500 individuals are covered by these waivers in the four states, with large variation among the states in the number covered, ranging from 36 served in Colorado to 231 served in Minnesota. The actual cost per person also varies widely, ranging from less than $10,000 per person in Colorado to almost $80,000 in New Hampshire. The differences in actual cost per person reflect differences in the target population. For example, according to Colorado Medicaid, the lower cost per person reflects the fact that the waiver targets individuals who, although they receive costly treatment following discharge from the hospital, receive these services for only a short period of time. In contrast, New Hampshire reports that their higher cost per person reflects their target population, who are more disabled than TBI waiver recipients in other states and whom other states generally do not place in the community.

In its standard Medicaid program, Missouri includes a package of services targeted specifically to adults with TBI, including neuropsychological, psychological, vocational, and recreational services, as well as physical, occupational, and speech therapies. Adults with TBI receive this service package for 6 to 12 months. In state fiscal year 1996, Missouri Medicaid provided its TBI service package to an average of 19 persons each month at a cost totaling almost $614,000. Missouri Medicaid officials chose to narrowly target these services to adults with TBI under the standard Medicaid program because this was administratively simpler than a home and community-based waiver.

VR and ILS Provide Services to Reintegrate Adults With TBI Into the Community

VR and ILS—Department of Education programs administered by the states—provide services to disabled adults, including adults with TBI, to support their reentry into the community. VR programs provide vocational rehabilitation services to help disabled individuals prepare for and obtain employment. ILS provides training, peer support, advocacy, and referral through a decentralized system of federally funded ILS programs to help people with disabilities live independently. Both programs are financed by a combination of federal and state funds—totaling roughly $2.5 billion in 1996—and receive referrals from a variety of sources.

VR provides vocational rehabilitation services to individuals with disabilities, including adults with TBI, to prepare them for and support them during their transition to employment. To be eligible, individuals must have a documentable disability that impedes employment but does not preclude the ability to work and must demonstrate a need for vocational rehabilitation services. Eligible individuals and VR counselors develop an individualized plan that includes an employment objective and services needed to reach that objective. These services can include rehabilitative therapies and supported employment services, which provide individuals who are integrated into a work setting post-employment support—such as job coaching or on-the-job training—to help facilitate their transition to employment. VR generally can provide supported employment services, for a maximum of 18 months; after this time, states must either find additional funds to pay for continuing services or discontinue the services. Adults with TBI, however, may still need these services to continue working.

All federally funded ILS centers are required to provide four core services—independent living skills training, peer support, advocacy, and referral—to individuals with disabilities, including adults with TBI, on a continuing basis. Whether a center purchases additional services for consumers is determined locally. As a result, there is likely to be variation in whether ILS offers other services, such as personal assistant services or home modification, from state to state and within a state. ILS emphasizes peer support and consumer-directed action. The adult with TBI is provided information and peer support to determine his or her specific needs as well as referrals and advocacy from an ILS specialist. Trainers—generally individuals with similar disabilities—help the consumer identify barriers and ways to get around them. In some of the states we contacted, TBI experts expressed concern about the ILS model of consumer-directed needs assessment. Adults with TBI often do not recognize their own limitations and lack executive skills to coordinate services.

Medicaid Outspends Both VR and ILS for Adults With TBI in Three of Four States With TBI Waivers

Medicaid, VR, and ILS expenditures for adults with TBI are small relative to total program expenditures. Total Medicaid expenditures for adults with TBI are unknown, but the expenditures for TBI home and community-based waiver services alone in three of the four states with these waivers are greater than the combination of VR expenditures for adults with TBI and all ILS expenditures.

States with small Medicaid programs targeted specifically to adults with TBI are able to identify the costs of these programs. VR agencies are able to identify the costs of services to adults with TBI. However, the costs of adults with TBI served by ILS or the entire Medicaid program cannot be determined. Medicaid waiver expenditures for 1996 vary widely, from $300,000 in Colorado to $6.6 million in New Jersey; VR and ILS expenditures vary less. (See table 2 for federal and state expenditures in these programs.)

State-Financed Programs Provide Services to Adults With TBI

Five states that we contacted—Arizona, Florida, Massachusetts, Missouri, and Pennsylvania—have developed programs funded exclusively by the state to provide services to a generally small number of adults with TBI.These programs—which obtain services from other programs and pay only for services that cannot be financed otherwise—are more flexible than Medicaid waiver programs. For example, Massachusetts’ program has a sliding fee scale for services, which would not be permitted under Medicaid. Florida and Missouri have no income requirement for case management services, although Missouri restricts other services to those whose income is at or below 185 percent of poverty.

While case management is a key component of each of these programs,the funds available to purchase services vary widely, as do the number of people served. (See table 3.)

The states’ administration of their programs varies somewhat with regard to program referral, restrictions, and oversight. Four programs receive referrals from individuals, families, providers, advocates, and other state agencies. Florida’s program, however, receives notification from a central registry—to which admitting hospitals are mandated to report—of all individuals with a TBI who are hospitalized overnight. Individuals reported to the central registry are assigned to case managers, who provide the individual and his or her family with information on all available resources. The Florida program tries to refer as many individuals as possible to the vocational rehabilitation program with the objective of returning them to work.

Four of the five states—Arizona, Florida, Massachusetts, and Missouri—do not place limits on the length of time services can be provided. In contrast, Pennsylvania places time—and cost—limits on services provided. In Pennsylvania, adults with TBI are limited to 36 months for case management services and 2 years for rehabilitation services. To date, however, Pennsylvania has only enforced its cost limit, which is $125,000 per year per person for rehabilitation.

Four of the five states—Pennsylvania is the exception—have legislatively mandated that their state-funded programs have an advisory council to provide guidance and oversight. These advisory councils are generally composed of representatives of persons with TBI, state agencies concerned with TBI, and experts in the field.

Despite State Efforts to Provide Services, Certain Individuals Are Likely to Confront Substantial Barriers

Some adults with TBI encounter substantial barriers in accessing services that will support their reintegration into the community. Although the states we contacted have developed strategies to expand such services, a small number of individuals relative to the number of adults with TBI are generally served by these programs. For example, in 1996, Colorado provided services under its TBI Medicaid waiver to 36 adults and Missouri served 223 in its state-funded program; GAO analysis shows that Colorado and Missouri have 4,006 and 5,578 individuals, respectively, who sustain a TBI each year. Florida is the exception. In 1996, Florida served more than 3,100 individuals with TBI, and the state estimates that 1,829 residents sustain a TBI each year.

We asked program representatives and experts to describe individuals who have the greatest difficulty in accessing services from these and other programs and the consequences of being unable to access services. These experts most frequently identified three groups: individuals who are cognitively impaired but lack physical impairments, individuals without personal advocates, and individuals with problematic behaviors. They reported that many of these people ultimately end up homeless or in nursing homes, institutions for mental illness, prisons, and other institutions.

Individuals Lacking Physical Impairments

Individuals who are cognitively impaired but lack physical disabilities are less likely than those with more visible impairments to obtain services. Experts repeatedly told us that adults with TBI who walk, talk, and look “normal” are refused services, even though they cannot maintain themselves in the community without help. Cognitively impaired people frequently lack executive skills—such as managing time, money, and other aspects of daily living—and have difficulty functioning independently. This difficulty will most likely last throughout their lifetime.

These individuals frequently do not qualify for Medicaid waiver services under programs for the physically disabled because they have little to no difficulty in bathing, dressing, eating, or other activities of daily living used to assess disability. The services needed by these adults with TBI—which may include someone to remind them to pay the bills or provide assistance in figuring out their bank balance—are relatively low-cost but crucial to their ability to live in the community.

Individuals Without Personal Advocates

The lack of executive skills also complicates the ability of adults with TBI to negotiate the various service delivery systems. People without someone to act as their personal advocate have difficulty obtaining services from multiple programs. We repeatedly heard that an adult with TBI without an effective and knowledgeable advocate would probably not receive services.

People without social support systems or whose social support systems fail also fall into this category. Adults with TBI often return to their parents’ home following hospital discharge. Even those married at injury may be cared for by their parents, since many married adults with TBI divorce post-injury. TBI advocates report that parents who have been the primary caregiver frequently are unable to continue to provide care due to exhaustion, aging, or death. As a result, individuals cared for by their parents for years suddenly appear, trying to obtain services to remain in the community.

Individuals With Problematic Behaviors

People with problematic behaviors—such as aggression, destructiveness, or participation in illegal activities—generally do not have the skills required to return to the community and usually require expensive treatment in residential environments with a great deal of structure. Without treatment, these individuals are the most likely to become homeless, be committed to a mental institution, or be sentenced to prison.

A number of providers, such as day treatment or outpatient rehabilitation programs and nursing homes, often will not accept people with behavioral problems, either because of potential disruption to their programs or because they claim that Medicaid reimbursement rates do not compensate them for the resources needed to care for these individuals. For example, we were told about one person who had been discharged from 14 nursing homes in 6 months due to behavioral problems. Some of the states we contacted do not have programs for adults with TBI who have behavioral problems. Minnesota funds treatment for limited numbers of individuals with the most severe behaviors, but funding at a lower level may be inadequate to provide services for those less severely affected.

Conclusion

With faster emergency response and advances in technology and treatment, the number of persons surviving a TBI has increased. A substantial number of adults with TBI are cognitively impaired and some have physical disabilities; however, their longevity is usually not affected.

As a result, individuals with permanent disability require long-term supportive services to remain in the community.

The nine states we contacted deliver long-term community-based services to adults with TBI through Medicaid or state-funded programs. As shown by our analysis of Medicaid programs targeted specifically to adults with TBI and state-financed programs, few adults with TBI are being served by these programs. Based on state reports of the number of individuals who sustain a TBI in a year, the gap between the number receiving long-term services and the estimated number of disabled adults with TBI remains wide.

Agency Comments

We provided a draft of this report to the Administrator of HCFA. We also provided draft reports to officials at the Department of Education, CDC, National Institutes of Health, the Health Resources and Services Administration, and the Brain Injury Association; Medicaid officials; vocational rehabilitation officials in each of five states with Medicaid programs specifically targeting adults with TBI; and officials of the five state-funded programs for persons with TBI. A number of these officials provided technical or clarifying comments, which we incorporated as appropriate.

In addition, CDC pointed out the need for data and referral systems by which persons with TBI-related disability are identified and referred for services. CDC suggested that components of such systems might include, for example, population-based registries of persons sustaining acute TBI (developed in conjunction with state TBI surveillance systems) and guidelines for acute care providers and hospitals pertaining to follow-up service referral for patients with TBI. In many or most jurisdictions, such systems do not exist, with the result that many persons with TBI-related disabilities—especially those who have sustained less severe injuries—may be unaware of the availability of services. CDC’s comments reinforce our conclusions that the need for services among people with TBI appears to greatly exceed the services delivered.

We will send copies of this report to the Secretaries of the Departments of Health and Human Services and Education, the Administrator of HCFA, state officials in the nine states we interviewed, appropriate congressional committees, and other interested parties. We will also make copies available to others upon request.

Please contact me on (202) 512-7114 or Phyllis Thorburn on (202) 512-7012 if you or your staff have any questions. Major contributors to this report are Sally Kaplan and Mary Ann Curran.

Traumatic Brain Injury Act of 1996

The Congress passed the Traumatic Brain Injury Act of 1996 (P.L. 104-166) to expand efforts to identify methods of preventing TBI, expand biomedical research efforts to prevent or minimize the severity of dysfunction as a result of TBI, and to improve the delivery and quality of services through state demonstration projects. The legislation authorizes CDC to carry out projects to reduce the incidence of TBI, the National Institutes of Health (NIH) to grant awards for basic and applied TBI research, and the Health Resources and Services Administration (HRSA) to carry out demonstration projects to improve access to services for the assessment and treatment of TBI. A total of $24.5 million for fiscal years 1997 through 1999 was authorized for the act.

In response to the authorizations included in the Traumatic Brain Injury Act, CDC issued grants to 11 states in July 1997 to develop new TBI surveillance projects and planned to submit reports to the Congress on surveillance projects in spring 1998 and in 1999. A grant to develop an additional state TBI registry is scheduled to be awarded in summer 1998. NIH plans to conduct a TBI consensus development conference in October 1998. The consensus panel will address the epidemiology, consequences, treatment, and outcomes of TBI and make recommendations regarding rehabilitation practices and research needs. HRSA awarded demonstration project grants to 21 states, which became effective October 1997.

Scope and Methodology

We focused our study on post-acute services provided to individuals who sustain a TBI as adults. We defined post-acute services as those provided after hospital discharge. In most of the states we contacted, individuals injured at age 22 or older are considered differently than individuals injured prior to age 22, who receive services from programs for persons with a developmental disability.

Based on a review of the literature and interviews with individuals knowledgeable about TBI, we assembled a list of 35 states that have developed programs targeted to persons with TBI. From that list, we selected nine states: four with Medicaid TBI home and community-based waivers and five with state programs providing direct services to adults with TBI. We selected the TBI waiver states with the largest (New Hampshire) and second smallest (Colorado) estimated per capita cost for 1996.

Categories of Services Provided by States We Contacted

Figure III.1 provides an overview of the broad categories of services provided to adults with TBI by standard Medicaid programs, by broad-based and TBI Medicaid home and community-based waivers, and by VR and ILS programs. Although there is substantial overlap among the general categories of service, there are differences in the groups to whom services are targeted, the requirements to obtain them, and the length of time services are provided.

Services Covered by Four States’ TBI Home and Community-Based Waivers

Figure IV.1 shows the specific services offered to adults with TBI by four of the states that we contacted—Colorado, Minnesota, New Hampshire, and New Jersey—under their TBI home and community-based Medicaid waivers.

Case management is a Medicaid administrative function in Colorado.

PT, OT, ST are physical, occupational, and speech therapies.

Other services include substance abuse counseling, home health care, family support services, crisis response, community support, supported employment, or night supervision.

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