[Congressional Bills 103th Congress]
[From the U.S. Government Publishing Office]
[S. 725 Introduced in Senate (IS)]

103d CONGRESS
  1st Session
                                 S. 725

 To amend the Public Health Service Act to provide for the conduct of 
  expanded studies and the establishment of innovative programs with 
       respect to traumatic brain injury, and for other purposes.


_______________________________________________________________________


                   IN THE SENATE OF THE UNITED STATES

                April 1 (legislative day, March 3), 1993

  Mr. Kennedy introduced the following bill; which was read twice and 
         referred to the Committee on Labor and Human Resources

_______________________________________________________________________

                                 A BILL


 
 To amend the Public Health Service Act to provide for the conduct of 
  expanded studies and the establishment of innovative programs with 
       respect to traumatic brain injury, and for other purposes.

    Be it enacted by the Senate and House of Representatives of the 
United States of America in Congress assembled,

SECTION 1. SHORT TITLE.

    This Act may be cited as the ``Traumatic Brain Injury Act of 
1993''.

SEC. 2. FINDINGS AND PURPOSE.

    (a) Findings.--Congress finds that--
            (1) the incidence of head injury in the United States is 
        increasing, with over 2,000,000 head injuries per year 
        resulting from automobile crashes, sports, recreational 
        activities, assaults, violence and other falls and incidents;
            (2) a majority of all head injuries are caused by motor 
        vehicle accidents;
            (3) individuals between the ages of 15 and 24 are at 
        greatest risk for sustaining head injuries;
            (4) of the individuals who sustain head injuries each year, 
        approximately 500,000 require hospitalization, and 75,000 to 
        100,000 of such individuals die within hours of the injury;
            (5) of the individuals who survive head injuries each year, 
        approximately 70,000 to 90,000 will suffer irreversible 
        debilitating loss of function, 5,000 will develop epilepsy as a 
        result of the injury, and 2,000 will exist in a coma;
            (6) a significant number of individuals with traumatic 
        brain injury are not easily restored to society and require 
        years of rehabilitation, medical follow-up and integrated 
        community services, which are costly and frequently not readily 
        available;
            (7) individuals sustaining traumatic brain injury require 
        coordinated and specialized services, including post-injury 
        supervised programs facilitating reentry into the community;
            (8) many health and social service agencies, both public 
        and private, overlook, exclude or inadequately serve 
        individuals surviving traumatic brain injury;
            (9) society bears an economic cost of approximately 
        $25,000,000,000 per year for the direct and indirect costs of 
        traumatic brain injury, which include medical treatment, 
        rehabilitative and support services and lost income;
            (10) a program to develop national standards for helmets 
        used by bicyclists and others is needed; and
            (11) a national plan to provide services for individuals 
        surviving traumatic brain injuries and their families is 
        needed.
    (b) Purpose.--It is the purpose of this Act to--
            (1) facilitate the conduct of research and the collection 
        and compiling of accurate statistical data on traumatic brain 
        injury;
            (2) raise public awareness concerning the risks and 
        consequences of such injuries and the distinct needs of 
        individuals (and their families) following survival from 
        traumatic brain injury;
            (3) promote the creation of innovative programs and 
        policies to prevent traumatic brain injury and to rehabilitate 
        those individuals who have survived such injuries;
            (4) designate a Federal agency to oversee and promote 
        projects relating to the prevention of, and rehabilitation 
        from, traumatic brain injury;
            (5) create State advisory boards to coordinate citizen 
        participation in community programs dealing with traumatic 
        brain injury;
            (6) create a registry to advance epidemiologic research on 
        such trauma;
            (7) establish standards for the marketing of brain injury 
        services;
            (8) require the Secretary to publish various reports 
        concerning the activities of the Department of Health and Human 
        Services in this area, including an annual review of relevant 
        activities; and
            (9) provide for the initiation of a program to establish 
        national standards for helmets used by bicyclists and others.

SEC. 3. AMENDMENT TO PUBLIC HEALTH SERVICE ACT.

    Title XII of the Public Health Service Act (42 U.S.C. 300d et seq.) 
is amended--
            (1) by redesignating part C as part D;
            (2) in section 1232(a) (42 U.S.C. 300d-32(a)), by inserting 
        ``other than part C,'' after ``carrying out this title,''; and
            (3) by inserting after part B, the following new part:

                    ``Part C--Traumatic Brain Injury

``SEC. 1225. DEFINITIONS.

    ``As used in this part:
            ``(1) Administrator.--The term `Administrator' means the 
        Administrator of the Agency for Health Care Policy and 
        Research.
            ``(2) Director.--The term `Director' means the Director of 
        the Centers for Disease Control and Prevention.
            ``(3) Traumatic brain injury.--The term `traumatic brain 
        injury' means an acquired injury to the brain caused by an 
        external physical force. Such term does not include brain 
        dysfunction caused by congenital or degenerative disorders, nor 
        does such term include birth trauma. Such term is synonymous 
        with the term `head injury'.

``SEC. 1225A. AGENCY FOR HEALTH CARE POLICY AND RESEARCH STUDY OF 
              EFFECTIVENESS OF TRAUMATIC BRAIN INJURY INTERVENTIONS.

    ``(a) In General.--The Secretary, acting through the Administrator, 
shall conduct a study concerning traumatic brain injury.
    ``(b) Major Findings.--The study conducted under subsection (a) 
shall seek to--
            ``(1) identify common therapeutic interventions which are 
        used for the rehabilitation of individuals with traumatic brain 
        injuries, and shall include an analysis of--
                    ``(A) the effectiveness of each such intervention 
                in improving the functioning of individuals with brain 
                injuries; and
                    ``(B) the comparative effectiveness of 
                interventions employed in the course of rehabilitation 
                of individuals with brain injuries to achieve the same 
                or similar clinical outcome; and
            ``(2) develop practice guidelines for the rehabilitation of 
        traumatic brain injury.
    ``(c) Reporting Requirements.--Not later than 4 years after the 
date of enactment of this part, the Secretary shall prepare and submit 
to the appropriate committees of Congress, a report containing the 
results of the studies conducted under this section.
    ``(d) Authorization of Appropriation.--There are authorized to be 
appropriated to carry out this section, $2,000,000 for fiscal year 
1994, and such sums as may be necessary for each of the fiscal years 
1995 through 1996.

``SEC. 1225B. CENTERS FOR DISEASE CONTROL AND PREVENTION STUDY OF 
              TRAUMATIC BRAIN INJURY OCCURRENCE.

    ``(a) In General.--The Secretary, acting through the Director, and 
in cooperation with other Public Health Service agencies as may be 
necessary, shall conduct studies concerning traumatic brain injury, and 
shall establish a reporting system under subsection (b).
    ``(b) Reporting System.--To assist in data and information 
gathering, the Director shall establish a uniform reporting system 
under which hospitals, State and local health-related agencies will 
report to the Director on matters including--
            ``(1) the occurrence of traumatic brain injuries; and
            ``(2) the health insurance status of individuals with 
        traumatic brain injury.
The reporting system should be established to permit the Director to 
make an accurate assessment of resource needs and long term outcomes.
    ``(c) Survey and Cooperative Agreements.--
            ``(1) Survey.--The Director shall determine which Federal, 
        State, local or other entities collect data on traumatic brain 
        injury and the means by which such entities collect such data.
            ``(2) Cooperative agreements.--The Director may enter into 
        cooperative agreements with other agencies, and provide 
        assistance to other entities with responsibility for data 
        collection, to establish traumatic brain injury as a specific 
        reportable condition in existing and future reporting systems. 
        Any data systems established in conjunction with such agencies 
        should be compatible with other such data systems.
    ``(d) Major Findings of Studies.--The studies conducted under 
subsection (a) shall seek to--
            ``(1) determine the major causes of traumatic brain injury;
            ``(2) determine the preventive efforts that are being used 
        by States and non-profit agencies to reduce the occurrence of 
        such injuries;
            ``(3) determine the number of individuals surviving 
        traumatic brain injuries, and the cost of treatment and other 
        related costs;
            ``(4) develop a uniform reporting system to facilitate the 
        reporting to the Centers for Disease Control and Prevention 
        concerning the occurrence of traumatic brain injury;
            ``(5) identify States and localities that have approved 
        mandated helmet use laws for bicyclist and others;
            ``(6) determine the health insurance status of individuals 
        with traumatic brain injury; and
            ``(7) initiate a program of prevention research to develop 
        effective prevention of traumatic brain injury.
    ``(e) Reporting Requirements.--Not later than 4 years after the 
date of enactment of this part, the Secretary shall prepare and submit 
to the appropriate committees of Congress, a report containing the 
results of the studies conducted under this section.
    ``(f) Biennial Report.--The Secretary shall biennially prepare a 
report containing recommendations for the prevention of traumatic brain 
injuries. The report shall also identify States that have mandated 
helmet laws for bicyclists and others. Such reports shall be 
disseminated to State health officers.
    ``(g) Authorization of Appropriation.--There are authorized to be 
appropriated to carry out this section, $2,000,000 for fiscal year 
1994, and such sums as may be necessary for each of the fiscal years 
1995 through 1996.

``SEC. 1225C. SPECIAL PREVENTION PROJECTS.

    ``(a) In General.--The Secretary shall cooperate with, and may 
provide assistance to, public and private nonprofit entities to reduce 
the incidence of traumatic brain injury through the establishment and 
effectuation of prevention projects. In carrying out this section, the 
Secretary may award grants to State and local entities, and to public 
or non-profit private entities, to support--
            ``(1) special prevention and public awareness initiative 
        projects;
            ``(2) model traumatic brain injury prevention, research and 
        support programs;
            ``(3) projects that study the service needs of individuals 
        with traumatic brain injury; and
            ``(4) projects involving grants for services coordination.
    ``(b) Requirements.--To be eligible to receive assistance under 
subsection (a), an entity shall--
            ``(1) prepare and submit to the Secretary an application, 
        at such time, in such manner, and containing such information 
        as the Secretary may require; and
            ``(2) provide assurances to the Secretary that any 
        preventive measures implemented under a prevention project 
        funded under this section may include--
                    ``(A) behavioral and environmental interventions 
                (such as physical restraints or helmets for individuals 
                using bicycles, in-line roller skates, and 
                skateboards);
                    ``(B) the use of innovative and proven model 
                prevention approaches;
                    ``(C) the promotion of activities that will 
                minimize brain injury risk in athletes (such as the use 
                of head protection gear); and
                    ``(D) the improvement of community-level access to 
                data-base systems to assist in designing, developing, 
                and implementing traumatic brain injury prevention 
                programs.
    ``(c) Authorization of Appropriations.--There are authorized to be 
appropriated to carry out this section, $4,000,000 for fiscal year 
1994, and such sums as may be necessary for each of the fiscal years 
1995 and 1996.

``SEC. 1225D. BASIC AND APPLIED RESEARCH.

    ``(a) In General.--The Secretary, acting through the Director of 
the National Institutes of Health, may provide assistance to public and 
private nonprofit entities to support the conduct of basic and applied 
research concerning 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 conducted 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 implementing 
this section the Secretary shall emphasize--
            ``(1) the development of new methods and modalities for the 
        more effective diagnosis, measurement 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 evaluation of 
        therapies that retard, prevent or reverse brain damage after 
        acute head injury, that arrest further deterioration following 
        injury and that provide the restitution of function for 
        individuals with long-term injuries;
            ``(3) the integration of basic research into clinical 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 research;
            ``(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 conferences on 
        managing head injury and related rehabilitation 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 traumatic brain injury. Such 
programs shall include State advisory boards, patient advocacy and 
service coordination systems, and State registries concerning 
individuals affected 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 nonrecurring 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 containing such information 
        as the Secretary may require;
            ``(2) provide assurances that it will prepare and submit to 
        the Secretary reports describing the activities undertaken 
        under the State system established under the grant; and
            ``(3) provide for the establishment of a Statewide program 
        that includes a State registry for traumatic brain injury 
        information, a program of patient advocacy and service 
        coordination, and a State advisory board with respect to 
        activities under this section.
    ``(c) Specific Program Requirements.--
            ``(1) State registry.--To be eligible to receive 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 requirements; 
                        and
                    ``(ii) a violation of such privacy and 
                confidentiality procedures or the unauthorized use of 
                such information may result in a loss of support 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 coordination.--To be eligible to 
        receive a grant under subsection (a), a State shall--
                    ``(A) designate a State coordinator for traumatic 
                brain injuries who--
                            ``(i) shall establish policies and 
                        standards for coordinating services within the 
                        State for individuals with traumatic brain 
                        injury;
                            ``(ii) may contract with qualified agencies 
                        or employ staff to provide services under this 
                        section on a statewide basis to eligible 
                        individuals;
                            ``(iii) shall be responsible for a program 
                        of activities related to preventing and 
                        reducing the rate of traumatic brain injuries 
                        in the State according to standards established 
                        by the Centers for Disease Control and 
                        Prevention; and
                            ``(iv) shall, after consultation with the 
                        State advisory board established under 
                        paragraph (3), establish standards regarding 
                        the marketing of services (by hospitals and 
                        other providers) to traumatic brain injury 
                        patients or family members, disseminate the 
                        standards to case management programs, and 
                        furnish information on such standards to 
                        individuals who sustain traumatic brain 
                        injuries (and the family members of such 
                        individuals) at the earliest appropriate 
                        opportunity after the individual has sustained 
                        the injury (such standards to include (at a 
                        minimum) a rule prohibiting payments under a 
                        case management program under this section for 
                        referring patients);
                    ``(B) provide assurances that a protection and 
                advocacy system established under this section will--
                            ``(i) provide legal, administrative and 
                        other appropriate remedies or approaches to 
                        ensure the protection of, and advocacy for, the 
                        rights of individuals with traumatic brain 
                        injury within the State who are or may be 
                        eligible for treatment, services, 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 individuals 
                        with traumatic brain injuries when incidents 
                        are reported for the provision of excessive or 
                        unnecessary services or other complaints 
                        relating to the care of such individuals, 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 provide 
                rehabilitative services so that injured persons or 
                individuals responsible for such persons may obtain 
                needed service to alleviate injuries and avoid 
                secondary problems; and
                    ``(D) for purposes of identifying the services 
                required to prevent the institutionalization or to 
                minimize the need for residential rehabilitation in the 
                case of traumatic brain injuries, establish a services 
                coordination program that shall--
                            ``(i) provide for the initial assessment of 
                        the individual's need for traumatic brain 
                        injury services;
                            ``(ii) provide for the reassessment of each 
                        patient at regular intervals to determine the 
                        extent of each patient's progress, to ascertain 
                        whether a patient is being kept too long in a 
                        given setting or provided services 
                        inappropriately, or to determine whether the 
                        patient would be better served by other 
                        services or in another setting;
                            ``(iii) prepare a treatment plan for each 
                        individual requiring services coordination, 
                        within an appropriate period after the 
                        individual sustains the injury, based on a 
                        consultation with the individual (other than an 
                        individual who is comatose in which case 
                        consultation shall be with a person with legal 
                        responsibility over such individual) and any 
                        person named by the individual (preparation of 
                        the plan may be delayed based on a 
                        certification, including a brief explanation of 
                        the reason for the delay, by a physician 
                        attesting that such a delay is in the 
                        individual's best interests with a copy of the 
                        treatment plan and any modifications to the 
                        plan being presented to the individual or the 
                        individual's legal representative);
                            ``(iv) ensure that each individual's 
                        treatment plan is regularly updated (based on 
                        consultation with the individual and the person 
                        responsible for the injured individual) with 
                        data and information about treatments and 
                        services provided, as well as specific measures 
                        of the individual's current performance or 
                        activity relative to goals previously 
                        established;
                            ``(v) assist the individual in obtaining 
                        services necessary to allow the individual to 
                        remain in the community;
                            ``(vi) coordinate home care services with 
                        other services;
                            ``(vii) ensure appropriate, accessible, and 
                        cost-effective services;
                            ``(viii) assist the individual with 
                        problems related to the provision of home care 
                        services;
                            ``(ix) ensure the quality of home care 
                        services;
                            ``(x) assess the individual's need for and 
                        level of home care services at appropriate 
                        intervals during the course of the individual's 
                        treatment under the program; and
                            ``(xi) explore efforts to include services 
                        coordination provisions under the State's 
                        medicaid program under section 1931 of the 
                        Social Security Act.
            ``(3) State advisory board.--
                    ``(A) In general.--To be eligible to receive a 
                grant under subsection (a), a State shall establish an 
                advisory board within the appropriate health department 
                of the State or within another department as designated 
                by the chief executive officer of the State.
                    ``(B) Functions.--An advisory board established 
                under subparagraph (A) shall be cognizant of findings 
                and concerns of Federal, State and local agencies, 
                citizens groups, and private industry (such as 
                insurance, health care, automobile, and other industry 
                entities). Such advisory boards shall encourage citizen 
                participation through the establishment of public 
                hearings and other types of community outreach 
                programs.
                    ``(C) Composition.--An advisory board established 
                under subparagraph (A) shall be composed of--
                            ``(i) representatives of--
                                    ``(I) the corresponding State 
                                agencies involved;
                                    ``(II) public and nonprofit private 
                                health related organizations;
                                    ``(III) other disability advisory 
                                or planning groups within the State;
                                    ``(IV) members of an organization 
                                or foundation representing traumatic 
                                brain injury survivors in that State; 
                                and
                                    ``(V) injury control programs at 
                                the State or local level if such 
                                programs exist; and
                            ``(ii) a substantial number of individuals 
                        who are survivors of traumatic brain injury, or 
                        the family members of such individuals; and
    ``(d) Report.--Not later than 2 years after the date of enactment 
of this part, the Secretary shall prepare and submit to the appropriate 
committees of Congress a report concerning the findings and results of 
the programs established under this section, including measures of 
outcomes and consumer and surrogate satisfaction.
    ``(e) Authorization of Appropriations.--There are authorized to be 
appropriated to carry out this section, $27,000,000 for fiscal year 
1994, and such sums as may be necessary for each of the fiscal years 
1995 and 1996.''.

SEC. 4. NATIONAL HEAD INJURY AWARENESS MONTH.

    The month of October, 1993, is hereby designated as ``National Head 
Injury Month'' and the President is requested to issue a proclamation 
calling on the people of the United States to observe such month with 
appropriate ceremonies and activities.

SEC. 5. EFFECTIVE DATE.

    This Act shall become effective on October 1, 1993.

                                 <all>

S 725 IS----2