National Advocacy

Nation Watch—Advocacy

The TBI Act

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Please distribute this Fact Sheet on funding the TBI Act in 2005 to your elected officials and to your friends, family and other brain injury advocates.

Highlights of the TBI Act

On October 17, 2000, President Bill Clinton signed the TBI Act Amendments of 2000, as Title XIII of H.R.4365, the Children's Health Act of 2000. Advocacy successfully secured nearly every provision proposed at the July 1999 Stakeholders Meeting. The following is a summary of the provisions gained. The TBI Act is again up for reauthorization in 2005.

Extends the authorization of the Traumatic Brain Injury Act from three years to five years.
Appropriates such sums as may be necessary for each of the fiscal years 2001 through 2005.
Changes the definition of TBI by replacing the phrase "anoxia due to near drowning" with "anoxia due to trauma."
Authorizes the Centers for Disease Control and Prevention (CDC) in order to expand state surveillance, education and prevention programs for TBI.
Authorizes the National Institutes of Health to carry out applied research related to cognitive disorders and neurobehavioral consequences, including the development, modification, and evaluation of therapies and programs of rehabilitation toward reaching or restoring normal capabilities in areas such as reading, comprehension, speech, reasoning, and deduction.
Authorizes state-based Protection and Advocacy services.
Authorizes the Health Resources and Services Administration to make capacity building and system change grants. The HRSA section lightens the "cash match" burden on states by allowing for "in-kind" matches, extends the amount of time states can apply for and receive grants to include implementation of successful projects started under the demonstration grants, and adds language that recognizes self-determination and consumer direction of services and supports.

Regarding appropriations the Act states, "There are authorized to be appropriated to carry out this section such sums as may be necessary for each of the fiscal years 2001 through 2005." This means we will mount a campaign each year to get full funding for all programs.

Details on the Amendment and Reauthorization of the TBI Act

Specifically, the Centers for Disease Control & Prevention is authorized to:

Make grants to States or their designees to operate the State's traumatic brain injury registry and to academic institutions to conduct applied research that will support registry development.
Study the incidence and prevalence in all age groups and in institutional settings and develop strategies to obtain the incidence and prevalence of mild traumatic brain injury.
Disseminate information nationally on incidence, prevalence and secondary conditions and to provide information from hospitals, emergency rooms and trauma centers on availability of State services and resources.

Specifically, the Health Resources and Services Administration is authorized to:

Make grants to States to develop, change, or enhance community-based service delivery systems that include timely access to comprehensive appropriate services and supports that promote full participation by individuals with brain injury and their families in decision making.

This section focuses on designing services for children and those who are under or inappropriately served particularly in institutional settings, rural areas, and culturally and linguistically diverse communities. The section specifically authorizes awarding contracts to nonprofit entities for consumer or family service access training, consumer support, peer mentoring, and parent-to-parent programs. It specifically allows for the development of individual and family service coordination or case management systems and supporting other needs identified by the State's advisory board.
Make grants to States to build state capacity by educating consumers and families, training professionals in public and private sector financing, developing or improving case management or service coordination systems, developing best practices in multiple areas, improving data sets coordinated across systems, and other needs identified by a State plan supported by its advisory council.
Removes the word "demonstration" from the title of the HRSA program and clearly supports continuation of previously awarded demonstration projects. A State that received a grant under this program prior to the date of the enactment of the Children's Health Act of 2000 may compete for new project grants after the date of enactment. The awarding of these continuations is, of course, contingent on appropriations.
Addresses the issue of best practices, supports the Olmstead decision and the ADA and provides that programs be supported by quality assurance measures, state-of-the-art health care and integrated community supports regardless of the severity of injury.
Requires the State agency responsible for administering amounts received under a grant under this section to demonstrate that it has obtained knowledge and expertise of traumatic brain injury and the unique needs associated with traumatic brain injury.

Other provisions

The definition of TBI is changed by replacing the phrase "anoxia due to near drowning" with "anoxia due to trauma."
The new definition of TBI and the terms of the Act now may not be changed without "consultation with States and other appropriate public or nonprofit private entities." That means that we have a say-so in any changes made to the definition of TBI or to the terms of the Act.

The TBI Act of 2000

H.R. 4365 Children's Health Act of 2000

TITLE XIII--Traumatic Brain Injury

SEC. 1301. Programs of Centers for Disease Control and Prevention.

(a) In General- Section 393A of the Public Health Service Act (42 U.S.C. 280b-1b) is amended--

(1) in subsection (b)--

(A) in paragraph (1), by striking `and' at the end;

(B) in paragraph (2), by striking the period and inserting `; and'; and

(C) by adding at the end the following:

(3) the implementation of a national education and awareness campaign regarding such injury (in conjunction with the program of the Secretary regarding health -status goals for 2010, commonly referred to as Healthy People 2010), including--

(A) the national dissemination of information on--

(i) incidence and prevalence; and

(ii) information relating to traumatic brain injury and the sequelae of secondary conditions arising from traumatic brain injury upon discharge from hospitals and trauma centers; and

(B) the provision of information in primary care settings, including emergency rooms and trauma centers, concerning the availability of State level services and resources.';

(2) in subsection (d)--

(A) in the second sentence, by striking `anoxia due to near drowning.' and inserting `anoxia due to trauma.'; and

(B) in the third sentence, by inserting before the period the following: `, after consultation with States and other appropriate public or nonprofit private entities'.

(b) National Registry - Part J of title III of the Public Health Service Act (42 U.S.C. 280b et seq.) is amended by inserting after section 393A the following section:

National Program for Traumatic Brain Injury Registries

SEC. 393B. (a) In General - The Secretary, acting through the Director of the Centers for Disease Control and Prevention, may make grants to States or their designees to operate the State's traumatic brain injury registry, and to academic institutions to conduct applied research that will support the development of such registries, to collect data concerning--

(1) demographic information about each traumatic brain injury;

(2) information about the circumstances surrounding the injury event associated with each traumatic brain injury;

(3) administrative information about the source of the collected information, dates of hospitalization and treatment, and the date of injury; and

(4) information characterizing the clinical aspects of the traumatic brain injury, including the severity of the injury, outcomes of the injury, the types of treatments received, and the types of services utilized.'.

SEC. 1302. Study and Monitor Incidence and Prevalence.

Section 4 of Public Law 104-166 (42 U.S.C. 300d-61 note) is amended--

(1) in subsection (a)(1)(A)--

(A) by striking clause (i) and inserting the following:

(i)(I) determine the incidence and prevalence of traumatic brain injury in all age groups in the general population of the United States, including institutional settings; and

(II) determine appropriate methodological strategies to obtain data on the incidence and prevalence of mild traumatic brain injury and report to Congress concerning such within 18 months of the date of the enactment of the Children's Health Act of 2000; and'; and

(B) in clause (ii), by striking `, if the Secretary determines that such a system is appropriate';

(2) in subsection (a)(1)(B)(i), by inserting `, including return to work or school and community participation,' after `functioning'; and

(3) in subsection (d), to read as follows:

(d) Authorization of Appropriations - There are authorized to be appropriated to carry out this section such sums as may be necessary for each of the fiscal years 2001 through 2005.'.

SEC. 1303. Programs of National Institutes of Health.

(a) Interagency Program - Section 1261(d)(4) of the Public Health Service Act (42 U.S.C. 300d-61(d)(4)) is amended--

(1) in subparagraph (A), by striking `degree of injury' and inserting `degree of brain injury';

(2) in subparagraph (B), by striking `acute injury' and inserting `acute brain injury'; and

(3) in subparagraph (D), by striking `injury treatment' and inserting `brain injury treatment'.

(b) Definition - Section 1261(h)(4) of the Public Health Service Act (42 U.S.C. 300d-61(h)(4)) is amended--

(1) in the second sentence, by striking `anoxia due to near drowning.' and inserting `anoxia due to trauma.'; and

(2) in the third sentence, by inserting before the period the following: `, after consultation with States and other appropriate public or nonprofit private entities'.

(c) Research on Cognitive and Neurobehavioral Disorders Arising from Traumatic Brain Injury - Section 1261(d)(4) of the Public Health Service Act (42 U.S.C. 300d-61(d)(4)) is amended--

(1) in subparagraph (C), by striking `and' after the semicolon at the end;

(2) in subparagraph (D), by striking the period at the end and inserting `; and'; and

(3) by adding at the end the following:

(E) carrying out subparagraphs (A) through (D) with respect to cognitive disorders and neurobehavioral consequences arising from traumatic brain injury, including the development, modification, and evaluation of therapies and programs of rehabilitation toward reaching or restoring normal capabilities in areas such as reading, comprehension, speech, reasoning, and deduction.'.

(d) Authorization of Appropriations - Section 1261 of the Public Health Service Act (42 U.S.C. 300d-61) is amended by adding at the end the following:

(i) Authorization of Appropriations - For the purpose of carrying out this section, there are authorized to be appropriated such sums as may be necessary for each of the fiscal years 2001 through 2005.'.

SEC. 1304. Programs of Health Resources and Services Administration.

Section 1252 of the Public Health Service Act (42 U.S.C. 300d-51) is amended-

(1) in the section heading by striking `demonstration';

(2) in subsection (a), by striking `demonstration';

(3) in subsection (b)(3)--

(A) in subparagraph (A)(iv), by striking `representing traumatic brain injury survivors' and inserting `representing individuals with traumatic brain injury'; and

(B) in subparagraph (B), by striking `who are survivors of' and inserting `with';

(4) in subsection (c)--

(A) in paragraph (1), by striking `, in cash,'; and

(B) in paragraph (2), by amending the paragraph to read as follows:

(2) Determination of Amount Contributed - Non-Federal contributions under paragraph (1) may be in cash or in kind, fairly evaluated, including plant, equipment, or services. Amounts provided by the Federal Government, or services assisted or subsidized to any significant extent by the Federal Government, may not be included in determining the amount of such contributions.';

(5) by redesignating subsections (e) through (h) as subsections (g) through (j), respectively;

(6) by inserting after subsection (d) the following subsections:

(e) Continuation of Previously Awarded Demonstration Projects - A State that received a grant under this section prior to the date of the enactment of the Children's Health Act of 2000 may compete for new project grants under this section after such date of the enactment.

(f) Use of State Grants-

(1) Community Services and Supports - A State shall (directly or through awards of contracts to nonprofit private entities) use amounts received under a grant under this section for the following:

(A) To develop, change, or enhance community-based service delivery systems that include timely access to comprehensive appropriate services and supports. Such service and supports--

(i) shall promote full participation by individuals with brain injury and their families in decision making regarding the services and supports; and

(ii) shall be designed for children and other individuals with traumatic brain injury.

(B) To focus on outreach to underserved and inappropriately served individuals, such as individuals in institutional settings, individuals with low socioeconomic resources, individuals in rural communities, and individuals in culturally and linguistically diverse communities.

(C) To award contracts to nonprofit entities for consumer or family service access training, consumer support, peer mentoring, and parent to parent programs.

(D) To develop individual and family service coordination or case management systems.

(E) To support other needs identified by the advisory board under subsection (b) for the State involved.

(2) Best practices-

(A) In General - State services and supports provided under a grant under this section shall reflect the best practices in the field of traumatic brain injury, shall be in compliance with title II of the Americans with Disabilities Act of 1990, and shall be supported by quality assurance measures as well as state-of-the-art health care and integrated community supports, regardless of the severity of injury.

(B) Demonstration by State Agency - The State agency responsible for administering amounts received under a grant under this section shall demonstrate that it has obtained knowledge and expertise of traumatic brain injury and the unique needs associated with traumatic brain injury.

(3) State Capacity Building - A State may use amounts received under a grant under this section to--

(A) educate consumers and families;

(B) train professionals in public and private sector financing (such as third party payers, State agencies, community-based providers, schools, and educators);

(C) develop or improve case management or service coordination systems;

(D) develop best practices in areas such as family or consumer support, return to work, housing or supportive living personal assistance services, assistive technology and devices, behavioral health services, substance abuse services, and traumatic brain injury treatment and rehabilitation;

(E) tailor existing State systems to provide accommodations to the needs of individuals with brain injury (including systems administered by the State departments responsible for health , mental health , labor/employment, education, mental retardation/developmental disorders, transportation, and correctional systems);

(F) improve data sets coordinated across systems and other needs identified by a State plan supported by its advisory council; and

(G) develop capacity within targeted communities.';

(7) in subsection (g) (as so redesignated), by striking `agencies of the Public Health Service' and inserting `Federal agencies';

(8) in subsection (i) (as redesignated by paragraph (3))--

(9) in subsection (j) (as so redesignated), by amending the subsection to read as follows:

(j) Authorization of Appropriations - For the purpose of carrying out this section, there are authorized to be appropriated such sums as may be necessary for each of the fiscal years 2001 through 2005.'.

SEC. 1305. State Grants for Protection and Advocacy Services.

Part E of title XII of the Public Health Service Act (42 U.S.C. 300d-51 et seq.) is amended by adding at the end the following:

SEC. 1253. State Grants for Protection and Advocacy Services.

(a) IN GENERAL- The Secretary, acting through the Administrator of the Health Resources and Services Administration (referred to in this section as the 'Administrator'), shall make grants to protection and advocacy systems for the purpose of enabling such systems to provide services to individuals with traumatic brain injury.

(b) SERVICES PROVIDED- Services provided under this section may include the provision of--

(1) information, referrals, and advice;

(2) individual and family advocacy;

(3) legal representation; and

(4) specific assistance in self-advocacy.

(c) Application - To be eligible to receive a grant under this section, a protection and advocacy system shall submit an application to the Administrator at such time, in such form and manner, and accompanied by such information and assurances as the Administrator may require.

(d) Appropriations less than $2,700,000-

(1) In General - With respect to any fiscal year in which the amount appropriated under subsection (i) to carry out this section is less than $2,700,000, the Administrator shall make grants from such amount to individual protection and advocacy systems within States to enable such systems to plan for, develop outreach strategies for, and carry out services authorized under this section for individuals with traumatic brain injury.

(2) Amount - The amount of each grant provided under paragraph (1) shall be determined as set forth in paragraphs (2) and (3) of subsection (e).

(e) Appropriations of $2,700,000 or more-

(1) Population Basis - Except as provided in paragraph (2), with respect to each fiscal year in which the amount appropriated under subsection (i) to carry out this section is $2,700,000 or more, the Administrator shall make a grant to a protection and advocacy system within each State.

(2) Amount - The amount of a grant provided to a system under paragraph (1) shall be equal to an amount bearing the same ratio to the total amount appropriated for the fiscal year involved under subsection (i) as the population of the State in which the grantee is located bears to the population of all States.

(3) Minimums - Subject to the availability of appropriations, the amount of a grant a protection and advocacy system under paragraph (1) for a fiscal year shall--

(A) in the case of a protection and advocacy system located in American Samoa, Guam, the United States Virgin Islands, or the Commonwealth of the Northern Mariana Islands, and the protection and advocacy system serving the American Indian consortium, not be less than $20,000; and

(B) in the case of a protection and advocacy system in a State not described in subparagraph (A), not be less than $50,000.

(4) Inflation Adjustment - For each fiscal year in which the total amount appropriated under subsection (i) to carry out this section is $5,000,000 or more, and such appropriated amount exceeds the total amount appropriated to carry out this section in the preceding fiscal year, the Administrator shall increase each of the minimum grants amount described in subparagraphs (A) and (B) of paragraph (3) by a percentage equal to the percentage increase in the total amount appropriated under subsection (i) to carry out this section between the preceding fiscal year and the fiscal year involved.

(f) Carryover - Any amount paid to a protection and advocacy system that serves a State or the American Indian consortium for a fiscal year under this section that remains unobligated at the end of such fiscal year shall remain available to such system for obligation during the next fiscal year for the purposes for which such amount was originally provided.

(g) Direct Payment - Notwithstanding any other provision of law, the Administrator shall pay directly to any protection and advocacy system that complies with the provisions of this section, the total amount of the grant for such system, unless the system provides otherwise for such payment.

(h) Annual Report - Each protection and advocacy system that receives a payment under this section shall submit an annual report to the Administrator concerning the services provided to individuals with traumatic brain injury by such system.

(i) Authorization of Appropriations - There are authorized to be appropriated to carry out this section $5,000,000 for fiscal year 2001, and such sums as may be necessary for each the fiscal years 2002 through 2005.

(j) Definitions - In this section:

(1) American Indian Consortium - The term `American Indian consortium' means a consortium established under part C of the Developmental Disabilities Assistance Bill of Rights Act (42 U.S.C. 6042 et seq.).

(2) Protection and Advocacy System - The term `protection and advocacy system' means a protection and advocacy system established under part C of the Developmental Disabilities Assistance and Bill of Rights Act (42 U.S.C. 6042 et seq.).

(3) State - The term `State', unless otherwise specified, means the several States of the United States, the District of Columbia, the Commonwealth of Puerto Rico, the United States Virgin Islands, Guam, American Samoa, and the Commonwealth of the Northern Mariana Islands.'.

SEC. 1306. Authorization of Appropriations for Certain Programs.

Section 394A of the Public Health Service Act (42 U.S.C. 280b-3) is amended by striking `and' after `1994' and by inserting before the period the following: `, and such sums as may be necessary for each of the fiscal years 2001 through 2005.'.

Full Funding for 2004

Make your voice heard--ask your senators and representatives to support the TBI Act. Write and/ or call your congresspersons and urge them to provide the $24 million that the TBI Act needs and deserves for 2005. Congress has been working to ensure the timely appropriations for fiscal year 2005.

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National Advocacy

Highlights of the TBI Act

Other provisions

The TBI Act of 2000

H.R. 4365 Children's Health Act of 2000 TITLE XIII--Traumatic Brain Injury

H.R. 4365 Children's Health Act of 2000

TITLE XIII--Traumatic Brain Injury