II

103D CONGRESS

1ST SESSION S. 1098

To amend title XIX of the Social Security Act to provide for optional coverage

under State medicaid plans of case-management services for individuals

who sustain traumatic brain injuries, and for other purposes.

IN THE SENATE OF THE UNITED STATES

JUNE 15, 1993

Mr. ROCKEFELLER (for himself and Mr. DURENBERGER) introduced the

following bill; which was read twice and referred to the Committee on Finance

A BILL

To amend title XIX of the Social Security Act to provide

for optional coverage under State medicaid plans of casemanagement services for individuals who sustain traumatic brain injuries, and for other purposes.

1 Be it enacted by the Senate and House of Representa2 tives of the United States of America in Congress assembled,

3 SECTION 1. SHORT TITLE.

4 This Act may be cited as the ‘‘Brain Injury Rehabili5 tation Quality Act of 1993’’.
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1 SEC. 2. MEDICAID COVERAGE OF CASE-MANAGEMENT

2 SERVICES FOR INDIVIDUALS WITH TRAU3 MATIC BRAIN INJURIES.

4 (a) IN GENERAL.—Section 1905(a) of the Social Se5 curity Act (42 U.S.C. 1396d(a)) is amended—

6 (1) by striking ‘‘and’’ at the end of paragraph

7 (21);

8 (2) by striking the period at the end of para9 graph (24) and inserting a semicolon;

10 (3) by redesignating paragraphs (22), (23), and

11 (24) as paragraphs (25), (22), and (23), respec12 tively, and by transferring and inserting paragraph

13 (25) after paragraph (23), as so redesignated; and

14 (4) by inserting after paragraph (23), as redes15 ignated, the following new paragraph:

16 ‘‘(24) case-management services provided (in

17 accordance with section 1931) for individuals who

18 sustain traumatic brain injuries; and’’.

19 (b) CASE-MANAGEMENT SERVICES DESCRIBED.—

20 Title XIX of the Social Security Act (42 U.S.C. 1396 et

21 seq.) is amended by adding at the end the following new

22 section:

23 ‘‘CASE-MANAGEMENT SERVICES FOR INDIVIDUALS WITH

24 TRAUMATIC BRAIN INJURIES

25 ‘‘SEC. 1931. (a) IN GENERAL.—For purposes of sec26 tion 1905(a)(24), case-management services for individ-
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1 uals who sustain traumatic brain injuries are services pro2 vided to an eligible individual (as described in subsection

3 (d)) through a State case-management program that

4 meets the requirements of subsection (b).

5 ‘‘(b) REQUIREMENTS FOR STATE CASE-MANAGE6 MENT PROGRAMS.—

7 ‘‘(1) STATE COORDINATOR.—A State case-man8 agement program meets the requirements of this

9 subsection if the State has designated a State coor10 dinator for traumatic brain injuries who—

11 ‘‘(A) establishes policies, standards, and

12 procedures for providing services under this sec13 tion to eligible individuals,

14 ‘‘(B) contracts with qualified agencies or

15 employs staff to provide services under this sec16 tion to eligible individuals,

17 ‘‘(C) supervises and coordinates services

18 for eligible individuals,

19 ‘‘(D) makes necessary reports to the Sec20 retary, and

21 ‘‘(E) performs any other duties described

22 in this section.

23 ‘‘(2) CASE-MANAGEMENT SERVICES.—A State

24 case-management program meets the requirements

25 of this subsection if the program provides or ar-
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1 ranges for the provision of the following case-man2 agement services for eligible individuals:

3 ‘‘(A) An initial assessment of—

4 ‘‘(i) the individual’s need for case5 management services, and

6 ‘‘(ii) if the individual is an appro7 priate candidate for receiving case-manage8 ment services, the individual’s need for

9 other services, with an emphasis on identi10 fying community-based services required to

11 prevent institutionalization or minimize the

12 need for residential rehabilitation.

13 ‘‘(B) Preparation of a treatment plan for

14 each individual requiring case-management

15 services based on consultation with the individ16 ual (other than an individual who is comatose)

17 and any person named by the individual. Prepa18 ration of the plan shall be completed—

19 ‘‘(i) as soon as possible after the indi20 vidual suffers the injury, but may be de21 layed (by one or more periods of no more

22 than 15 days each) based on a physician

23 certification that contains a brief expla24 nation of the reason for the delay and at-
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1 tests that such a delay is in the best inter2 ests of the individual, or

3 ‘‘(ii) in the case of an individual who,

4 at the time the individual sustains the

5 traumatic brain injury, is not an eligible

6 individual, within 60 days after such indi7 vidual becomes an eligible individual.

8 ‘‘(C) Presentation of a copy of the initial

9 treatment plan and any subsequent modifica10 tions to the plan to the individual or the indi11 vidual’s legal representative.

12 ‘‘(D) Regular updates of each individual’s

13 treatment plan (based on consultation with the

14 care provider, the individual, and any person

15 named by the individual) with data and infor16 mation about treatments and services provided,

17 as well as specific outcome measures of the in18 dividual’s performance or activity relative to

19 goals previously established.

20 ‘‘(E) Assistance in obtaining services nec21 essary to allow the individual to remain in the

22 community, including coordination of home care

23 services with other services.
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1 ‘‘(F) Advocacy services to assist the indi2 vidual in obtaining appropriate, accessible, and

3 cost-effective services.

4 ‘‘(G) Assessment of the individual’s need

5 for and level of home care services at appro6 priate intervals during the course of the individ7 ual’s treatment under the program.

8 ‘‘(H) Reassessment of each individual at

9 regular intervals of at least every 3 months to

10 determine the extent of each individual’s

11 progress and to ascertain whether the individ12 ual—

13 ‘‘(i) is being kept too long in a given

14 setting,

15 ‘‘(ii) is being provided services inap16 propriately, or

17 ‘‘(iii) would be better served by other

18 services or in another setting.

19 ‘‘(I) In accordance with standards estab20 lished by the State coordinator, verification that

21 any residential setting or facility which provides

22 services to individuals under the program meets

23 the requirements applicable to nursing facilities

24 under section 1919.
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1 ‘‘(J) A complaint procedure, overseen by

2 the State coordinator, regarding any treatment

3 or service provided to an individual which pro4 vides that—

5 ‘‘(i) the individual or any person

6 named by the individual may make an oral

7 or written complaint;

8 ‘‘(ii) the individual or any person

9 named by the individual may receive the

10 response to the complaint;

11 ‘‘(iii) the confidentiality of any com12 plainant is maintained;

13 ‘‘(iv) an investigation of the complaint

14 is completed within—

15 ‘‘(I) 30 days for a routine com16 plaint,

17 ‘‘(II) 7 days for a complaint of

18 abuse or neglect, and

19 ‘‘(III) 24 hours if the individual’s

20 life or safety is immediately threat21 ened; and

22 ‘‘(v) if the complaint is with respect to

23 a publicly appointed case manager or case

24 worker, substitution of such manager or

25 worker is allowed.
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1 ‘‘(3) COORDINATION AND ADMINISTRATION OF

2 BENEFITS AND SERVICES.—A State case-manage3 ment program meets the requirements of this sub4 section if the program assists in ensuring that an el5 igible individual is referred to and applies for other

6 benefits (through cooperative agreements with agen7 cies administering benefit programs) and services for

8 which the individual is eligible under other Federal,

9 State, or local programs, including—

10 ‘‘(A) employment services, including voca11 tional assessment, training, and placement,

12 sheltered employment, and supported employ13 ment;

14 ‘‘(B) education benefits, including primary,

15 secondary, and higher education programs;

16 ‘‘(C) services available under the Older

17 Americans Act of 1965;

18 ‘‘(D) disability insurance under title II;

19 and

20 ‘‘(E) independent living services under title

21 VII of the Rehabilitation Act of 1973.

22 ‘‘(c) COORDINATION OF SERVICES.—

23 ‘‘(1) IN GENERAL.—An eligible individual who

24 is receiving case-management services described in

25 subsection (b)(2) may receive the following services
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1 under such individual’s treatment plan for which the

2 individual is otherwise eligible under a State plan:

3 ‘‘(A) Acute rehabilitation services, focusing

4 on intensive physical and cognitive restorative

5 services in the early months following injury.

6 ‘‘(B) Subacute rehabilitation in either in7 patient or outpatient settings.

8 ‘‘(C) Transitional living services to train

9 the individual for more independent living, with

10 an emphasis on compensating for the loss of

11 skills which may not be restored.

12 ‘‘(D) Lifelong living services for individuals

13 discharged from rehabilitation who require on14 going lifetime support.

15 ‘‘(E) Home care, including comprehensive

16 training for family or other informal caregivers.

17 ‘‘(F) Day treatment and other outpatient

18 programs in nonresidential settings.

19 ‘‘(G) Independent living services to allow

20 the individual to live at home with optimal per21 sonal control over services.

22 ‘‘(H) Behavior disorder treatment services

23 to address or resolve patterns of behavior which

24 prevent or hinder participation in active reha25 bilitation.
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1 ‘‘(I) Respite and recreation services to aid

2 the individual and members of the individual’s

3 family in adapting psychologically and environ4 mentally to residual deficits resulting from

5 brain injury.

6 ‘‘(J) Treatment for conditions related to

7 alcoholism and drug dependency.

8 ‘‘(2) WAIVER OF CERTAIN LIMITATIONS ON THE

9 EXPENDITURE OF FUNDS.—

10 ‘‘(A) IN GENERAL.—In accordance with

11 standards established by the State coordinator,

12 a State case-management program may waive

13 restrictions on the amount, duration, and scope

14 of services otherwise applicable under the State

15 plan for medical assistance under this title to

16 the extent necessary to carry out a treatment

17 plan for an individual.

18 ‘‘(B) HOME CARE SERVICES IN EXCESS OF

19 LIMITATIONS ESTABLISHED BY STATE COORDI20 NATOR.—In accordance with standards estab21 lished by the State coordinator, a State case22 management program may approve the use of

23 funds provided under the State plan for medical

24 assistance under this title to pay for home care
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1 services when such home care services exceed

2 limitations established by the State coordinator.

3 ‘‘(C) OUT-OF-STATE PLACEMENTS FOR

4 RESIDENTIAL REHABILITATION SERVICES.—In

5 accordance with standards established by the

6 State coordinator, a State case management

7 program may approve the use of funds provided

8 under the State plan for medical assistance

9 under this title to pay for out-of-State place10 ments for residential rehabilitation services.

11 ‘‘(3) SPECIAL RULE FOR PROVIDERS OF LIVING

12 SERVICES.—No living services described in para13 graph (1) may be provided to or on behalf of any

14 individual under this section unless the State case15 management program with which the individual is

16 enrolled has entered into an agreement with the en17 tity providing such services that specifies—

18 ‘‘(A) the living services to be provided,

19 ‘‘(B) the period of time over which such

20 services will be provided, and

21 ‘‘(C) the charges to the patient for provid22 ing such services.

23 ‘‘(d) ELIGIBILITY OF INDIVIDUALS TO RECEIVE

24 SERVICES.—
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1 ‘‘(1) IN GENERAL.—An individual is eligible to

2 receive case-management services under this section

3 if the individual resides in a State that has imple4 mented a case-management program that meets the

5 requirements of this section, is eligible to receive

6 medical assistance under a State plan under this

7 title, has suffered a traumatic brain injury (as de8 fined in paragraph (2)), and is moderately or se9 verely disabled (as defined in paragraph (3)).

10 ‘‘(2) TRAUMATIC BRAIN INJURY DEFINED.—

11 For purposes of this section, the term ‘traumatic

12 brain injury’ means a sudden insult or damage to

13 the brain or its coverings caused by an external

14 physical force which may produce a diminished or al15 tered state of consciousness, and which results in a

16 temporary or permanent impairment of cognitive or

17 mental abilities or physical functioning, or disturb18 ance of behavioral or emotional functioning. Such

19 term does not include any injuries of a degenerative

20 or congenital nature.

21 ‘‘(3) DEFINITIONS RELATING TO MODERATELY

22 OR SEVERELY DISABLED INDIVIDUALS.—

23 ‘‘(A) IN GENERAL.—For purposes of this

24 section, the term ‘moderately or severely dis25 abled’ means in the case of an individual 6
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1 years of age or older, an individual who (with2 out regard to income or employment status) is

3 certified under the case-management program

4 as—

5 ‘‘(i) needing substantial assistance or

6 supervision from another individual with at

7 least 2 activities of daily living (as defined

8 in subparagraph (C));

9 ‘‘(ii) needing substantial supervision

10 due to cognitive or other mental impair11 ment and needing substantial assistance or

12 supervision from another individual with at

13 least 1 activity of daily living or in comply14 ing with a daily drug regimen; or

15 ‘‘(iii) needing substantial supervision

16 from another individual due to behaviors

17 that are dangerous (to the individual or

18 others), disruptive, or difficult to manage.

19 ‘‘(B) MODERATELY OR SEVERELY DIS20 ABLED CHILD.—

21 ‘‘(i) IN GENERAL.—For purposes of

22 this section, the term ‘moderately or se23 verely disabled’ means, in the case of an

24 individual under 6 years of age, an individ25 ual who is certified under the State case
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1 management program as suffering from

2 comparable levels of disability which would

3 entitle such individual to benefits under

4 this title.

5 ‘‘(ii) COMPARABLE LEVELS OF DIS6 ABILITY.—For purposes of clause (i), the

7 term ‘comparable levels of disability’

8 means physical, cognitive, or other mental

9 impairments that limit the ability of an in10 dividual who is under 6 years of age to

11 perform activities of daily living appro12 priate for the age of the individual that are

13 comparable to the physical, cognitive, or

14 other mental impairments that limit the

15 ability of an individual 6 years of age or

16 older such that the individual is described

17 in clause (i), (ii), or (iii) of subparagraph

18 (A).

19 ‘‘(C) ACTIVITY OF DAILY LIVING DE20 FINED.—The term ‘activity of daily living’

21 means any of the following activities:

22 ‘‘(i) Bathing.

23 ‘‘(ii) Dressing.

24 ‘‘(iii) Transferring.

25 ‘‘(iv) Toileting.
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1 ‘‘(v) Eating.

2 ‘‘(4) COVERAGE OF INDIVIDUALS UNDER DIS3 ABILITY PROTECTIONS.—Individuals receiving serv4 ices through a State case-management program

5 under this section shall be considered to be individ6 uals with disabilities for purposes of the Americans

7 with Disabilities Act of 1990.

8 ‘‘(e) ADDITIONAL DUTIES OF STATE COORDINA9 TOR.—

10 ‘‘(1) PREVENTION OF TRAUMATIC BRAIN IN11 JURY.—The State coordinator shall establish a pro12 gram of activities related to preventing and reducing

13 the rate of traumatic brain injuries in the State.

14 ‘‘(2) TRAUMATIC BRAIN INJURY REGISTRY.—

15 ‘‘(A) IN GENERAL.—The State coordinator

16 shall establish and maintain a central registry

17 of individuals who sustain traumatic brain in18 jury using standards established by the Sec19 retary under subsection (f) in order to—

20 ‘‘(i) collect information to facilitate

21 the development of injury prevention,

22 treatment, and rehabilitation programs;

23 and

24 ‘‘(ii) ensure the provision to individ25 uals with traumatic brain injury of infor-
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1 mation regarding appropriate public or pri2 vate agencies that provide rehabilitative

3 services so that injured individuals may ob4 tain needed service to alleviate injuries and

5 avoid secondary problems, such as mental

6 illness and chemical dependency.

7 ‘‘(B) DISSEMINATION OF DATA.—The

8 State coordinator shall provide summary reg9 istry data to public and private entities to con10 duct studies using data collected by the trau11 matic brain injury registry established under

12 subparagraph (A). The State coordinator may

13 charge a fee for all expenses associated with the

14 provision of data or data analysis.

15 ‘‘(3) NOTIFICATION OF INJURIES TO JOB

16 TRAINING PROGRAMS.—Within a reasonable period

17 of time after receiving a report that an individual

18 has sustained a traumatic brain injury or spinal

19 cord injury, the State coordinator shall notify any

20 State agency responsible for employment services

21 and job training and shall forward the individual’s

22 name and other identifying information to such

23 agency.

24 ‘‘(4) STANDARDS FOR MARKETING OF BRAIN

25 INJURY SERVICES.—The State coordinator, after
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1 consultation with the advisory committee established

2 under paragraph (6), shall—

3 ‘‘(A) monitor standards established by the

4 Secretary regarding the marketing of services

5 (by hospitals and other providers) to any indi6 vidual who has sustained traumatic brain injury

7 or family members of such individual,

8 ‘‘(B) disseminate such standards to State

9 case-management programs, and

10 ‘‘(C) furnish information about such stand11 ards to such individual and such family mem12 bers at the earliest appropriate opportunity

13 after such individual has sustained the injury.

14 Such standards shall include (at a minimum) a rule

15 prohibiting payments under a State case-manage16 ment program under this section for referring indi17 viduals to rehabilitation facilities.

18 ‘‘(5) STUDIES.—The State coordinator shall

19 collect injury incidence information (including the

20 prevalence, prevention, and treatment of traumatic

21 brain injury), analyze the information, and conduct

22 special studies regarding traumatic brain injury.

23 ‘‘(6) ESTABLISHMENT OF ADVISORY COMMIT24 TEE.—The State coordinator shall establish an advi25 sory committee (consisting of representatives of pro-
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1 fessionals who provide community-based services

2 under this section and individuals with traumatic

3 brain injuries and family members of such individ4 uals) to provide recommendations regarding the

5 needs of individuals with traumatic brain injuries,

6 provide advice on activities under paragraph (1), and

7 assist in the establishment of marketing standards

8 under paragraph (4).

9 ‘‘(7) PRIVACY.—Any data identifying specific

10 individuals which is collected by or provided to the

11 State coordinator may be used only for purposes of

12 case-management and rehabilitation and studies by

13 the State coordinator, in accordance with rules

14 adopted by the State coordinator.

15 ‘‘(8) ADOPTION OF STANDARDS FOR REPORT16 ING DATA AND OPERATION OF REGISTRIES.—The

17 State coordinator shall adopt such standards estab18 lished under subsection (f) as are necessary to carry

19 out this subsection. At a minimum, the State coordi20 nator shall adopt the standards relating to the mat21 ters identified in subparagraphs (A) through (E) of

22 subsection (f)(2).

23 ‘‘(9) ESTABLISHMENT OF REPORTING SYS24 TEM.—
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1 ‘‘(A) IN GENERAL.—The State coordinator

2 shall design and establish a reporting system

3 which requires either the treating hospital, med4 ical facility, or physician to report to the State

5 coordinator within a reasonable period of time

6 after the identification of any individual with

7 ICD diagnostic codes treated for a traumatic

8 brain injury in the State. The consent of the in9 jured individual is not required.

10 ‘‘(B) REPORT.—A report under subpara11 graph (A) shall include—

12 ‘‘(i) the name, age, and residence of

13 the injured individual;

14 ‘‘(ii) the date and cause of the injury;

15 ‘‘(iii) the initial diagnosis; and

16 ‘‘(iv) other information required by

17 the State coordinator.

18 ‘‘(C) LIABILITY PROTECTION.—The fur19 nishing of information pursuant to the system

20 established under subparagraph (A) shall not

21 subject any individual or facility to any action

22 for damages or other relief, provided that the

23 individual or facility acted in good faith in fur24 nishing the information.
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1 ‘‘(f) STANDARDS FOR REPORTING DATA AND OPER2 ATION OF REGISTRIES.—

3 ‘‘(1) IN GENERAL.—Not later than January 1,

4 1995, the Secretary of Health and Human Services,

5 acting through the Director of the Centers for Dis6 ease Control and Prevention, shall establish stand7 ards for the reporting of data on traumatic brain in8 juries and the operation of registries of traumatic

9 brain injuries for use by State coordinators under

10 this section.

11 ‘‘(2) SCOPE.—The standards established under

12 paragraph (1) shall at a minimum provide for—

13 ‘‘(A) the specific International Classifica14 tion of Diseases, Ninth Revision, Clinical Modi15 fication, diagnostic codes (hereafter referred to

16 in this subsection as ‘ICD diagnostic codes’) in17 cluded in the definitions of traumatic brain in18 jury;

19 ‘‘(B) the type of data to be reported;

20 ‘‘(C) standards for reporting specific types

21 of data;

22 ‘‘(D) the individuals and facilities required

23 to report and the time period in which reports

24 must be submitted; and
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1 ‘‘(E) criteria relating to the use of registry

2 data by public and private entities engaged in

3 research.’’.

4 (c) BUDGET NEUTRALITY.—

5 (1) IN GENERAL.—During the first 12-month

6 period a State provides case-management services to

7 which the amendments made by this section apply,

8 and each 12-month period thereafter, Federal finan9 cial participation for all services under a State plan

10 approved under title XIX of the Social Security Act

11 provided to individuals with traumatic brain injuries

12 shall not exceed the base-year amount determined

13 under paragraph (2).

14 (2) BASE-YEAR AMOUNT.—

15 (A) FIRST YEAR.—The base-year amount

16 for the first 12-month period to which para17 graph (1) applies shall be equal to the sum of—

18 (i) the amount of Federal financial

19 participation attributable to all services

20 provided to individuals with traumatic

21 brain injuries under a State plan in the

22 12-month period prior to the inclusion of

23 case-management services in the State

24 plan, as certified by the Secretary, plus
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1 (ii) such amount multiplied by the es2 timated percentage increase in the

3 Consumer Price Index for All-Urban Con4 sumers for the preceding 12-month period,

5 with appropriate adjustments to reflect

6 previous underestimations or overesti7 mations under this clause.

8 (B) OTHER YEARS.—The base-year

9 amount for any other 12-month period shall be

10 equal to the sum of—

11 (i) the base-year amount for the pre12 ceding 12-month period, plus

13 (ii) such amount multiplied by the es14 timated percentage increase in the

15 Consumer Price Index for All-Urban Con16 sumers for the preceding 12-month period,

17 with appropriate adjustments to reflect

18 previous underestimations or overesti19 mations under this clause.

20 (d) CONFORMING AMENDMENT.—Section 1915(g)(2)

21 of the Social Security Act (42 U.S.C. 1396n(g)(2)) is

22 amended by striking the period at the end and inserting

23 the following: ‘‘, but does not include any services provided

24 under section 1931.’’.
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1 (e) AUTHORIZATION OF APPROPRIATIONS.—There

2 are authorized to be appropriated $5,000,000 for each fis3 cal year beginning with fiscal year 1995 to carry out para4 graphs (1) and (2) of section 1931(e) of the Social Secu5 rity Act (as added by subsection (b)).

6 (f) EFFECTIVE DATE.—The amendments made by

7 subsections (a), (b), and (d) shall apply to calendar quar8 ters beginning on or after January 1, 1995.

9 SEC. 3. STUDY OF EFFECTIVENESS OF TRAUMATIC BRAIN

10 INJURY INTERVENTIONS.

11 (a) STUDY.—The Administrator of the Agency for

12 Health Care Policy and Research shall conduct a study

13 to identify common therapeutic interventions which are

14 used for the rehabilitation of traumatic brain injury pa15 tients, and shall include in the study an analysis of—

16 (1) the effectiveness of each such intervention

17 in improving the functioning of traumatic brain in18 jury patients; and

19 (2) the comparative effectiveness of interven20 tions employed in the course of rehabilitation of

21 traumatic brain injury patients to achieve the same

22 or similar clinical outcome.

23 (b) REPORT.—Not later than 3 years after the date

24 of the enactment of this Act, the Administrator of the

25 Agency for Health Care Policy and Research shall submit
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1 a report on the study conducted under subsection (a) to

2 the Congress.

3 (c) AUTHORIZATION OF APPROPRIATIONS.—There

4 are authorized to be appropriated $2,000,000 for each of

5 fiscal years 1994 through 1997 to carry out the purposes

6 of this section.

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