support the conduct of basic and applied research concern-
ing traumatic brain injury, especially with respect to the
biomechanics of brain injury, the molecular and cellular
characteristics of primary and secondary injury to the
brain and the development of improved experimental brain
injury models.
‘‘(b) SPECIFIC RESEARCH.—Research to be con-
ducted with assistance provided under subsection (a) shall
be determined by the Secretary, prior to the provision of
such assistance, to contribute to the strategies that will
limit primary and secondary mechanical, biochemical and
metabolic insults to the brain and minimize the extent,
severity and progression of resulting dysfunctions. In im-
plementing this section the Secretary shall emphasize—
‘‘(1) the development of new methods and mo-
dalities for the more effective diagnosis, measure-
ment of degree of injury, post-injury monitoring and
prognostic assessment of head injury for acute,
subacute and later phases of care;
‘‘(2) the development, modification and evalua-
tion of therapies that retard, prevent or reverse
brain damage after acute head injury, that arrest
further deterioration following injury and that pro-
vide the restitution of function for individuals with
long-term injuries;
‘‘(3) the integration of basic research into clini-
cal care settings;
‘‘(4) the development of a continuum of care
from acute care through rehabilitation, designed, to
the extent practicable, to integrate rehabilitation and
long-term outcome evaluation with acute care re-
search;
‘‘(5) the development of programs that increase
the participation of academic centers of excellence in
head injury treatment and rehabilitation research
and training; and
‘‘(6) the conduct of national consensus con-
ferences on managing head injury and related reha-
bilitation concerns, the findings of which shall be
published.
‘‘(c) AUTHORIZATION OF APPROPRIATIONS.—There
are authorized to be appropriated to carry out this section,
$5,000,000 for fiscal year 1994, and such sums as may
be necessary for each of the fiscal years 1995 and 1996.
‘‘SEC. 1225E. STATEWIDE PROGRAM FOR TRAUMATIC BRAIN
INJURY.
‘‘(a) GRANTS.—The Secretary shall award grants to
States for the establishment of programs related to trau-
matic brain injury. Such programs shall include State ad-
visory boards, patient advocacy and service coordination
systems, and State registries concerning individuals af-
fected by traumatic brain injuries. Services may also be
provided under this section, within the limits of service
availability, to individuals whose deficits are not due to
traumatic brain injury. To be eligible for such services,
such individuals should be comparable to traumatic brain
injury patients in regard to the range of services needed,
the severity and duration of deficits, and the etiology of
their deficits being due to a nonprogressive and non-
recurring disorder.
‘‘(b) GENERAL ELIGIBILITY REQUIREMENTS.—To be
eligible to receive a grant under subsection (a), a State
shall—
‘‘(1) prepare and submit to the Secretary an
application, at such time, in such manner, and con-
taining such information as the Secretary may re-
quire;
‘‘(2) provide assurances that it will prepare and
submit to the Secretary reports describing the activi-
ties undertaken under the State system established
under the grant; and
‘‘(3) provide for the establishment of a State-
wide program that includes a State registry for trau-
matic brain injury information, a program of patient
advocacy and service coordination, and a State advi-
sory board with respect to activities under this sec-
tion.
‘‘(c) SPECIFIC PROGRAM REQUIREMENTS.—
‘‘(1) STATE REGISTRY.—To be eligible to re-
ceive a grant under subsection (a), a State shall—
‘‘(A)(i) establish and maintain, through
the utilization of procedures to ensure privacy
and maintain the confidentiality of information,
which are acceptable to the Secretary, a central
registry of persons who sustain traumatic brain
injury in order to—
‘‘(I) collect information to facilitate
the development of injury prevention,
treatment, and rehabilitation programs;
and
‘‘(II) report data to the Director on
an annual basis for State reporting re-
quirements; and
‘‘(ii) a violation of such privacy and con-
fidentiality procedures or the unauthorized use
of such information may result in a loss of sup-
port under this section; and
‘‘(B) provide summary registry data or
data that is not personally identifiable to public
and private entities to conduct studies using
data collected by the traumatic brain injury
registry established under subparagraph (A),
for which the coordinator may charge a fee for
all expenses associated with the provision of
data or data analysis.
‘‘(2) ADVOCACY
AND
SERVICE
COORDINA-
TION.—To be eligible to receive a grant under sub-
section (a), a State shall—
‘‘(A) designate a State coordinator for
traumatic brain injuries who—
‘‘(i) shall establish policies and stand-
ards for coordinating services within the
State for individuals with traumatic brain
injury;
‘‘(ii) may contract with qualified agen-
cies or employ staff to provide services
under this section on a statewide basis to
eligible individuals;
‘‘(iii) shall be responsible for a pro-
gram of activities related to preventing and
reducing the rate of traumatic brain inju-
ries in the State according to standards es-
tablished by the Centers for Disease Con-
trol and Prevention; and
‘‘(iv) shall, after consultation with the
State advisory board established under
paragraph (3), establish standards regard-
ing the marketing of services (by hospitals
and other providers) to traumatic brain in-
jury patients or family members, dissemi-
nate the standards to case management
programs, and furnish information on such
standards to individuals who sustain trau-
matic brain injuries (and the family mem-
bers of such individuals) at the earliest ap-
propriate opportunity after the individual
has sustained the injury (such standards to
include (at a minimum) a rule prohibiting
payments under a case management pro-
gram under this section for referring pa-
tients);
‘‘(B) provide assurances that a protection
and advocacy system established under this sec-
tion will—
‘‘(i) provide legal, administrative and
other appropriate remedies or approaches
to ensure the protection of, and advocacy
for, the rights of individuals with trau-
matic brain injury within the State who
are or may be eligible for treatment, serv-
ices, or rehabilitation;
‘‘(ii) provide information and referral
to programs and services addressing the
needs of individuals with traumatic brain
injuries; and
‘‘(iii) provide for the investigation of
incidents of abuse and neglect of individ-
uals with traumatic brain injuries when in-
cidents are reported for the provision of
excessive or unnecessary services or other
complaints relating to the care of such in-
dividuals, and payment for the referral of
patients;
‘‘(C) ensure the provision to persons with
traumatic brain injury of information regarding
appropriate public or private agencies that pro-
vide rehabilitative services so that injured per-
sons or individuals responsible for such persons
may obtain needed service to alleviate injuries
and avoid secondary problems; and
‘‘(D) for purposes of identifying the serv-
ices required to prevent the institutionalization
or to minimize the need for residential rehabili-
tation in the case of traumatic brain injuries,