Traumatic Brain Injury: Programs Supporting Long-Term Services in
Selected States (Letter Report, 02/27/98, GAO/HEHS-98-55).
Pursuant to a congressional request, GAO reviewed federal and state
efforts to provide services the individuals with traumatic brain injury
(TBI), focusing on the: (1) primary federal and state programs that
provide adults with TBI services to help them function more
independently; (2) strategies that states have developed to enhance
access to TBI-related services; and (3) circumstances believed to be
most frequently associated with difficulty in obtaining services.
GAO noted that: (1) adults with TBI receive services to facilitate their
reintegration into the community primarily from three federal-state
programs: Medicaid, vocational rehabilitation (VR), and Independent
Living Services (ILS); (2) Medicaid provides medical, rehabilitation,
and social support services to poor individuals with disabilities; (3)
VR agencies provide services to individuals with disabilities to prepare
them for and support them during the transition to employment; (4) ILS
programs provide skills training to individuals with disabilities to
facilitate their independence in the community; (5) all three programs
are financed by a combination of federal and state funds and serve a
range of individuals with disabilities, only a small number of whom have
a TBI; (6) because most of the services covered by standard Medicaid
programs are medical, all states have expanded Medicaid services through
home and community-based waivers, which permit them to offer additional
services--such as homemaker services, adult day care, and nonmedical
transportation--to persons at risk of institutionalization; (7) these
Medicaid waivers generally target long-term community-based services to
a broad population, such as the physically disabled or disabled elderly;
(8) recognizing the difficulties adults with TBI experience in accessing
services, each of the states GAO contacted have developed various
strategies to target services to adults with TBI; (9) five target
Medicaid services specifically to limited numbers of adults with TBI;
(10) despite these strategies, service gaps are likely--the number of
adults with TBI who are provided services remains small relative to
estimates of the total number; (11) according to program representatives
and experts, those most likely to have difficulty accessing services
are: (a) individuals with cognitive impairment but who lack physical
disabilities; (b) individuals without an effective advocate to negotiate
the social service system or without a social support system; and (c)
individuals with problematic or unmanageable behaviors, such as
aggression, destructiveness, or participation in illegal behaviors; and
(12) without treatment, individuals with problematic or unmanageable
behaviors are the most likely to become homeless, institutionalized in a
mental facility, or imprisoned.
--------------------------- Indexing Terms -----------------------------
REPORTNUM: HEHS-98-55
TITLE: Traumatic Brain Injury: Programs Supporting Long-Term
Services in Selected States
DATE: 02/27/98
SUBJECT: Persons with disabilities
Elderly persons
Federal/state relations
State-administered programs
Health care services
Vocational rehabilitation
Health care programs
Rehabilitation programs
Long-term care
IDENTIFIER: Medicaid Program
Dept. of Education Vocational Rehabilitation Program
Dept. of Education Centers For Independent Living Program
Dept. of Education Independent Living Services Program
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Cover
================================================================ COVER
Report to Congressional Requesters
February 1998
TRAUMATIC BRAIN INJURY - PROGRAMS
SUPPORTING LONG-TERM SERVICES IN
SELECTED STATES
GAO/HEHS-98-55
Traumatic Brain Injury
(101528)
Abbreviations
=============================================================== ABBREV
CADI - Community Alternative for Disabled Individuals
CDC - Centers for Disease Control and Prevention
HCFA - Health Care Financing Administration
HRSA - Health Resources and Services Administration
ILS - Independent Living Services
NIH - National Institutes of Health
TBI - traumatic brain injury
VR - vocational rehabilitation
Letter
=============================================================== LETTER
B-277961
February 27, 1998
The Honorable Thomas J. Bliley, Jr.
Chairman, Committee on Commerce
House of Representatives
The Honorable James Greenwood
House of Representatives
Research has shown that traumatic brain injury (TBI) is the leading
cause of death and disability in young American adults.\1 Faster
emergency response and improved medical techniques have resulted in
more persons surviving their injuries, but many survive with a
substantial long-term neurological disability. There are no
comprehensive data describing the incidence of TBI-related
disability, making it difficult to estimate the costs of providing
adequate services to adults with TBI.\2 Reliable estimates of the
total number of individuals living with residual effects of TBI or
those currently requiring services are not now available. However,
it has been estimated that 1.5 to 2 million individuals sustain a TBI
each year.\3
Both the private and public sectors finance acute care services to
adults with TBI. Federal and state governments, however, pay for a
large part of post-acute services received by adults with TBI, since
private insurance generally limits post-acute services and does not
pay for long-term care and individuals may quickly exhaust personal
resources. In addition, individuals' longevity may be unaffected by
the injury and adults with TBI may require post-acute services for an
extended period of time--some for the remainder of their lives. As a
result, the costs of caring for a person with TBI can be substantial.
Because of your concern about the substantial governmental costs for
services to persons with TBI, you asked us to review federal-state
efforts to provide services to these individuals. Specifically, we
examined (1) the primary federal and state programs that provide
adults with TBI services to help them function more independently,
(2) the strategies that states have developed to enhance access to
TBI-related services, and (3) the circumstances believed to be most
frequently associated with difficulty in obtaining services. As
agreed with your office, we focused our study on post-acute services
for civilians injured as adults with an emphasis on services that
help reintegrate these individuals into the community.\4
To conduct our study, we visited two states, Arizona and
Pennsylvania, and interviewed representatives from seven other
states--Colorado, Florida, Massachusetts, Minnesota, Missouri, New
Hampshire, and New Jersey--generally considered leaders in providing
services to adults with TBI. We interviewed national experts in TBI;
representatives from state TBI advocacy groups, Medicaid, and state
vocational rehabilitation (VR) agencies; Medicaid providers; and case
managers. We also reviewed documents from these states. We did not
evaluate the effectiveness of any of the Medicaid or state programs.
We conducted our work from November 1996 to January 1998 in
accordance with generally accepted government auditing standards.
(See app. II for more information on our scope and methodology.)
--------------------
\1 The Traumatic Brain Injury Act of 1996 (P.L. 104-166) defines TBI
as an acquired injury to the brain that does not include brain
dysfunction caused by congenital or degenerative disorders or birth
trauma but may include injuries caused by anoxia due to near
drowning. (See app. I for a brief description of the act.)
\2 Incidence is a measure of the number of new injury cases in a
specified period; prevalence measures all existing cases of a
condition at a point in time.
\3 D. M. Sosin, J. E. Sniezek, and D. J. Thurman, "Incidence of
Mild and Moderate Brain Injury in the United States, 1991," Brain
Injury, Vol. 10, No. 1 (1996), pp. 47-54; J. F. Kraus and D. L.
McArthur, "Epidemiologic Aspects of Brain Injury," Neuroepidemiology,
Vol. 14, No. 2 (1996), pp. 435-49 (estimates are for 1992).
\4 For the purposes of this study, we defined post-acute services as
those provided after hospital discharge. Veterans and active
military with TBI may receive services from the Department of
Veterans Affairs or the Department of Defense; these services are not
discussed in this report. Most of the states we contacted use age 22
and older to define the adult TBI population.
RESULTS IN BRIEF
------------------------------------------------------------ Letter :1
Adults with TBI receive services to facilitate their reintegration
into the community primarily from three federal-state programs:
Medicaid, VR, and Independent Living Services (ILS). Medicaid
provides medical, rehabilitation, and social support services to poor
individuals with disabilities. VR agencies provide services to
individuals with disabilities to prepare them for and support them
during the transition to employment. ILS programs provide skills
training to individuals with disabilities to facilitate their
independence in the community.\5 All three programs are financed by a
combination of federal and state funds and serve a range of
individuals with disabilities, only a small number of whom have a
TBI. Although comprehensive data on TBI-related expenditures are not
available for these programs, in three of the five states with small
targeted Medicaid programs for adults with TBI, Medicaid expenditures
for the targeted programs were greater than the combination of VR
expenditures for adults with TBI and ILS expenditures for all
individuals with disabilities.
Because most of the services covered by standard Medicaid programs
are medical, all states have expanded Medicaid services through home
and community-based waivers, which permit them to offer additional
services--such as homemaker services, adult day care, and nonmedical
transportation--to persons at risk of institutionalization. These
Medicaid waivers generally target long-term community-based services
to a broad population, such as the physically disabled or disabled
elderly. Although Medicaid broad-based home and community-based
waivers cover many services that adults with TBI may require to
remain in the community, these programs' eligibility criteria are
often strict and based on certain physical limitations, such as
difficulty in bathing, dressing, or eating.
Recognizing the difficulties adults with TBI experience in accessing
services, each of the states that we contacted have developed various
strategies to target services to adults with TBI. Five target
Medicaid services specifically to limited numbers of adults with TBI.
Colorado, Minnesota, New Hampshire, and New Jersey use TBI home and
community-based waivers to target Medicaid services to less than 500
adults overall. Missouri has developed a package of services for
adults with TBI in its standard Medicaid program, which an average of
19 adults with TBI accessed monthly in 1996. Five states--Arizona,
Florida, Massachusetts, Missouri, and Pennsylvania--have established
state-financed programs specifically targeted to persons with TBI.
These programs are intended to fill funding gaps and are used as a
last resort. With the exception of Florida, which provided services
to over 3,000 individuals in 1996, these state-financed programs
together covered a small number of adults with TBI--about 1,300--in
1996.\6
Despite these strategies, service gaps are likely--the number of
adults with TBI who are provided services remains small relative to
estimates of the total number. 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, respectively, about 4,000 and 5,600
individuals who sustain a TBI each year. According to program
representatives and experts, those most likely to have difficulty
accessing services are (1) individuals with cognitive impairment but
who lack physical disabilities; (2) individuals without an effective
advocate to negotiate the social service system or without a social
support system; and (3) individuals with problematic or unmanageable
behaviors, such as aggression, destructiveness, or participation in
illegal behaviors. Without treatment, individuals with problematic
or unmanageable behaviors are the most likely to become homeless,
institutionalized in a mental facility, or imprisoned.
--------------------
\5 We use ILS to refer to both Independent Living Services programs
and Centers for Independent Living programs.
\6 Numbers of individuals served for Florida include both children
and adults.
BACKGROUND
------------------------------------------------------------ Letter :2
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.\7 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.\8
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.\9 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.\10
--------------------
\7 CDC unpublished data, Dec. 3, 1997.
\8 J. F. Kraus and D. L. McArthur, "Epidemiologic Aspects of
Brain Injury," p. 439.
\9 J. F. Kraus and D. L. McArthur, "Epidemiologic Aspects of
Brain Injury," p. 441.
\10 The exceptions are those individuals injured on the job and thus
covered by workers' compensation.
MEDICAID, VOCATIONAL
REHABILITATION, AND ILS
PROGRAMS PROVIDE SERVICES TO
ADULTS WITH TBI
------------------------------------------------------------ Letter :3
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.\11 (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.\12 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.\13 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.\14 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.
--------------------
\11 Adults with TBI may receive services from community mental health
centers.
\12 Medicaid, a $160 billion joint federal-state health financing
program, is authorized under title XIX of the Social Security Act and
is administered by the states under the general oversight of the
Health Care Financing Administration (HCFA), Department of Health and
Human Services. The federal share of a state's total Medicaid
expenditures can range from 50 to 83 percent.
\13 Examples of required services are inpatient and outpatient
hospital care, physician services, and nursing facility care.
Examples of optional services are rehabilitative services and
prescriptions.
\14 Forty-nine of the 50 states have at least one home and
community-based waiver. Arizona, the 50th state, has a program that
functions like a waiver program.
STATES TARGET MEDICAID
SERVICES TO SMALL GROUPS OF
ADULTS WITH TBI
---------------------------------------------------------- Letter :3.1
States generally use Medicaid home and community-based waivers to
target Medicaid services to small groups of adults with TBI.\15
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.\16
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.)
Table 1
Characteristics of Medicaid TBI Home and
Community-Based Waivers in Four States,
1996
Waiver
characteri New
stic Colorado Minnesota Hampshire New Jersey
---------- ---------- ---------- ---------- ----------
Target Hospital Individual Individual Individual
population patients s with s who have s who are
to cognitive been at risk of
facilitate and placed in placement
earlier behavioral or are at in nursing
discharge deficits; risk of homes
into post- persons placement
acute with in nursing
settings problemati homes
c
behaviors\
a
Actual 36 231 74\b 137
number of
individua
ls served
Average $9,281 $27,258\c $78,864 $47,936
cost per
person
Maximum 97 290 74 240
allowed
individua
ls
Maximum $13,969 $63,793 $88,524 $55,454
allowed
cost per
person
----------------------------------------------------------
\a Problematic behaviors include aggression to self or others,
property destruction, sexual inappropriateness, illegal activities,
and drug and alcohol abuse. Minnesota's waiver describes this
problematic behavior as occurring with such frequency, duration, or
intensity that the individual cannot be managed in another, less
structured environment.
\b New Hampshire's waiver is for individuals with acquired brain
injury and includes individuals not generally included in TBI waivers
(for example, individuals with Huntington's disease). The state
reports that of 85 individuals on this waiver since its inception,
less than one-half have had a TBI.
\c Actual cost per person in Minnesota is an average of costs for two
main levels of care with a total of 11 case mix classifications.
Source: HCFA.
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.\17
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.\18 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.\19 (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.
--------------------
\15 HCFA has developed a prototype TBI waiver application to expedite
the approval process for states.
\16 These states are Colorado, Connecticut, Iowa, Kansas, Louisiana,
Minnesota, New Hampshire, New Jersey, New York, North Dakota, South
Carolina, Utah, Vermont, Washington, and Wisconsin. As of January 1,
1998, Louisiana and Washington dropped their TBI waivers, while
Illinois and Maine received approval for their TBI waivers.
\17 Minnesota reports that some adults with TBI who require fewer
services are included in their Community Alternative for Disabled
Individuals (CADI) waiver, but the state is unable to estimate their
number.
\18 Under Colorado's Medicaid state plan, case management is an
administrative function and as such is provided to adults with TBI
covered by the waiver.
\19 Behavioral programming aims to decrease an individual's severe
maladaptive behaviors that interfere with the ability to remain in
the community.
VR AND ILS PROVIDE SERVICES
TO REINTEGRATE ADULTS WITH
TBI INTO THE COMMUNITY
---------------------------------------------------------- Letter :3.2
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.\20 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.\21 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.\22
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.\23 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.\24 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.
--------------------
\20 VR and ILS are authorized under the Rehabilitation Act of 1973
and are administered by the states under the general oversight of the
Rehabilitation Services Administration, Department of Education.
\21 The Rehabilitation Services Administration reports that there are
about 260 federally funded ILS centers nationally, with a minimum of
one in each state. There also are about 420 state-funded ILS
centers.
\22 The federal portion of VR expenditures is 78.7 percent. The
federal government pays 90 percent of the ILS program funded under
title VII, chapter 1, part B of the Rehabilitation Act of 1973 and 90
percent of title VII, chapter 2 of the act for special projects for
the blind elderly. Federally funded ILS centers also receive direct
funding under title VII, chapter 1, part C of the act, which makes up
from 0 to 100 percent of their total funding.
\23 In certain circumstances, supported employment services can be
provided after 18 months; however, this is rare.
\24 The Department of Education indicates that the vast majority of
ILS resources are used to hire staff and to provide core services.
MEDICAID OUTSPENDS BOTH VR
AND ILS FOR ADULTS WITH TBI
IN THREE OF FOUR STATES WITH
TBI WAIVERS
---------------------------------------------------------- Letter :3.3
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.)
Table 2
Federal-State Program Expenditures in
States With Targeted Medicaid Programs
for Adults With TBI (in Millions), 1996
Medicaid Federal-state
expenditures ILS
targeted to VR expenditures
small groups expenditures for all
of adults for all adults disabled
State with TBI\ with TBI\a adults\b
------------ ------------ -------------- --------------
Colorado $0.3\c $0.8 $1.8
Minnesota $6.3\c $1.6 $4.3
Missouri $0.6\d $1.8\e $3.2
New $5.8\c $0.1 $1.7
Hampshire
New Jersey $6.6\c $1.4 $2.5
----------------------------------------------------------
\a Reports by state VRs.
\b Report by ILS program, Rehabilitation Services Administration.
\c GAO estimates of 1996 expenditures for TBI-specific waivers.
\d Report by Missouri Medicaid.
\e VR expenditures for Missouri, a non-TBI waiver state, are for
closed cases only.
STATE-FINANCED PROGRAMS PROVIDE
SERVICES TO ADULTS WITH TBI
------------------------------------------------------------ Letter :4
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.\25 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,\26 the funds available to purchase services vary widely, as
do the number of people served. (See table 3.)
Table 3
Number of Adults Served and Service
Dollars Available for State-Funded TBI
Programs, 1996
Ariz. Fla. Mass. Mo.\a Pa.
------------------ ------ ------ ------ ------ ------
Persons served 169 3,108\ 400 223 531
b
Service dollars\c $0.2 $12.3\ $6.0 $0.6 $5.0
(in millions) d
----------------------------------------------------------
\a Individuals served and expenditures reflected in Missouri's
state-funded program are financed by the state's Department of
Health, not by Medicaid.
\b Includes children and adults.
\c Case management services are purchased with these funds in
Massachusetts and Pennsylvania but not in Arizona, Florida, and
Missouri.
\d Includes inpatient expenditures for persons with TBI and/or spinal
cord injury.
Source: State programs.
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.\27
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.
--------------------
\25 The Arizona and Florida programs also provide services to
individuals with a spinal cord injury.
\26 Case managers identify, obtain, and manage a set of services
tailored to individual needs from available programs and funding
sources.
\27 Pennsylvania's Head Injury Program reports that no new clients
have received rehabilitation services since early 1995 due to
insufficient funds.
DESPITE STATE EFFORTS TO
PROVIDE SERVICES, CERTAIN
INDIVIDUALS ARE LIKELY TO
CONFRONT SUBSTANTIAL BARRIERS
------------------------------------------------------------ Letter :5
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.\28
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.
--------------------
\28 Colorado officials recently reported that they are currently
serving 162 people.
INDIVIDUALS LACKING PHYSICAL
IMPAIRMENTS
---------------------------------------------------------- Letter :5.1
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
---------------------------------------------------------- Letter :5.2
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
---------------------------------------------------------- Letter :5.3
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
------------------------------------------------------------ Letter :6
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
------------------------------------------------------------ Letter :7
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.
---------------------------------------------------------- Letter :7.1
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.
William J. Scanlon
Director, Health Financing and
Systems Issues
TRAUMATIC BRAIN INJURY ACT OF 1996
=========================================================== Appendix I
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
========================================================== Appendix II
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
========================================================= Appendix III
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.
Figure III.1: Broad Categories
of Services by Program Provided
in One or More States We
Contacted
(See figure in printed
edition.)
SERVICES COVERED BY FOUR STATES'
TBI HOME AND COMMUNITY-BASED
WAIVERS
========================================================== Appendix IV
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.
Figure IV.1: TBI Home and
Community-Based Waiver Covered
Services in Four States
(See figure in printed
edition.)
\a Case management is a Medicaid administrative function in Colorado.
\b PT, OT, ST are physical, occupational, and speech therapies.
\c Other services include substance abuse counseling, home health
care, family support services, crisis response, community support,
supported employment, or night supervision.
Source: Medicare and Medicaid Guide, Commerce Clearing House.
*** End of document. ***