I

106TH CONGRESS

1ST SESSION H. R. 1193

To establish programs regarding early detection, diagnosis, and interventions

for newborns and infants with hearing loss.

IN THE HOUSE OF REPRESENTATIVES

MARCH 18, 1999

Mr. WALSH (for himself, Mr. BILIRAKIS, Mr. WAXMAN, Mr. DEAL of Georgia,

Mr. COBURN, Mr. UPTON, Mr. ACKERMAN, Ms. KILPATRICK, Mrs.

KELLY, Mr. SHOWS, Mrs. MORELLA, Mr. MCHUGH, Mr. DUNCAN, Mr.

SHERMAN, Mr. MCNULTY, Mr. FROST, Mrs. MALONEY of New York, Mr.

BALDACCI, Mr. BERMAN, Mr. WEYGAND, Mr. QUINN, Mr. FRELINGHUYSEN, Mr. KLECZKA, Mr. OLVER, Mr. FOSSELLA, Ms. DELAURO, Mr.

GEJDENSON, Mr. LEWIS of Georgia, Mr. YOUNG of Alaska, Mr. PASTOR,

Mr. DIXON, Mrs. JOHNSON of Connecticut, Mr. FALEOMAVAEGA, Mr.

POMEROY, Ms. ROS-LEHTINEN, Mr. ENGLISH, Mr. FARR of California,

Mr. STRICKLAND, Mr. PAYNE, Mr. DOYLE, Ms. SCHAKOWSKY, Mr.

WEXLER, Mr. ROTHMAN, Ms. SLAUGHTER, Mrs. CAPPS, and Mr. FOLEY)

introduced the following bill; which was referred to the Committee on

Commerce

A BILL

To establish programs regarding early detection, diagnosis,

and interventions for newborns and infants with hearing

loss.

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

2 This Act may be cited as the ‘‘Newborn and Infant

3 Hearing Screening and Intervention Act of 1999’’.

4 SEC. 2. EARLY DETECTION, DIAGNOSIS, AND INTERVEN5 TIONS FOR NEWBORNS AND INFANTS WITH

6 HEARING LOSS.

7 (a) DEFINITIONS.—For the purposes of this Act only,

8 the following terms in this section are defined as follows:

9 (1) HEARING SCREENING.—Newborn and in10 fant hearing screening consists of objective physio11 logic procedures to detect possible hearing loss and

12 to identify newborns and infants who, after re13 screening, require further audiologic and medical

14 evaluations.

15 (2) AUDIOLOGIC EVALUATION.—Audiologic

16 evaluation consists of procedures to assess the status

17 of the auditory system; to establish the site of the

18 auditory disorder; the type and degree of hearing

19 loss, and the potential effects of hearing loss on

20 communication; and to identify appropriate treat21 ment and referral options. Referral options should

22 include linkage to state IDEA Part C coordinating

23 agencies or other appropriate agencies, medical eval24 uation, hearing aid/sensory aid assessment,

25 audiologic rehabilitation treatment, national and
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1 local consumer, self-help, parent, and education or2 ganizations, and other family-centered services.

3 (3) MEDICAL EVALUATION.—Medical evaluation

4 by a physician consists of key components including

5 history, examination, and medical decision making

6 focused on symptomatic and related body systems

7 for the purpose of diagnosing the etiology of hearing

8 loss and related physical conditions, and for identi9 fying appropriate treatment and referral options.

10 (4) MEDICAL INTERVENTION.—Medical inter11 vention is the process by which a physician provides

12 medical diagnosis and direction for medical and/or

13 surgical treatment options of hearing loss and/or re14 lated medical disorder associated with hearing loss.

15 (5) AUDIOLOGIC REHABILITATION.—Audiologic

16 rehabilitation (intervention) consists of procedures,

17 techniques, and technologies to facilitate the recep18 tive and expressive communication abilities of a child

19 with hearing loss.

20 (6) EARLY INTERVENTION.—Early intervention

21 (e.g., nonmedical) means providing appropriate serv22 ices for the child with hearing loss and ensuring that

23 families of the child are provided comprehensive,

24 consumer-oriented information about the full range

25 of family support, training, information services,
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1 communication options and are given the oppor2 tunity to consider the full range of educational and

3 program placements and options for their child.

4 (b) PURPOSES.—The purposes of this Act are to clar5 ify the authority within the Public Health Service Act to

6 authorize statewide newborn and infant hearing screening,

7 evaluation and intervention programs and systems, tech8 nical assistance, a national applied research program, and

9 interagency and private sector collaboration for policy de10 velopment, in order to assist the States in making

11 progress toward the following goals:

12 (1) All babies born in hospitals in the United

13 States and its territories should have a hearing

14 screening before leaving the birthing facility. Babies

15 born in other countries and residing in the United

16 States via immigration or adoption should have a

17 hearing screening as early as possible.

18 (2) All babies who are not born in hospitals in

19 the United States and its territories should have a

20 hearing screening within the first 3 months of life.

21 (3) Appropriate audiologic and medical evalua22 tions should be conducted by 3 months for all

23 newborns and infants suspected of having hearing

24 loss to allow appropriate referral and provisions for
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1 audiologic rehabilitation, medical and early interven2 tion before the age of 6 months.

3 (4) All newborn and infant hearing screening

4 programs and systems should include a component

5 for audiologic rehabilitation, medical and early inter6 vention options that ensures linkage to any new and

7 existing state-wide systems of intervention and reha8 bilitative services for newborns and infants with

9 hearing loss.

10 (5) Public policy in regard to newborn and in11 fant hearing screening and intervention should be

12 based on applied research and the recognition that

13 newborns, infants, toddlers, and children who are

14 deaf or hard-of-hearing have unique language, learn15 ing, and communication needs, and should be the re16 sult of consultation with pertinent public and private

17 sectors.

18 (c) STATEWIDE NEWBORN AND INFANT HEARING

19 SCREENING, EVALUATION AND INTERVENTION PRO20 GRAMS AND SYSTEMS.—Under the existing authority of

21 the Public Health Service Act, the Secretary of Health

22 and Human Services (in this Act referred to as the ‘‘Sec23 retary’’), acting through the Administrator of the Health

24 Resources and Services Administration, shall make awards

25 of grants or cooperative agreements to develop statewide
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1 newborn and infant hearing screening, evaluation and

2 intervention programs and systems for the following pur3 poses:

4 (1) To develop and monitor the efficacy of

5 state-wide newborn and infant hearing screening,

6 evaluation and intervention programs and systems.

7 Early intervention includes referral to schools and

8 agencies, including community, consumer, and par9 ent-based agencies and organizations and other pro10 grams mandated by Part C of the Individuals with

11 Disabilities Education Act, which offer programs

12 specifically designed to meet the unique language

13 and communication needs of deaf and hard of hear14 ing newborns, infants, toddlers, and children.

15 (2) To collect data on statewide newborn and

16 infant hearing screening, evaluation and intervention

17 programs and systems that can be used for applied

18 research, program evaluation and policy develop19 ment.

20 (d) TECHNICAL ASSISTANCE, DATA MANAGEMENT,

21 AND APPLIED RESEARCH.—

22 (1) CENTERS FOR DISEASE CONTROL AND PRE23 VENTION.—Under the existing authority of the Pub24 lic Health Service Act, the Secretary, acting through

25 the Director of the Centers for Disease Control and
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1 Prevention, shall make awards of grants or coopera2 tive agreements to provide technical assistance to

3 State agencies to complement an intramural pro4 gram and to conduct applied research related to

5 newborn and infant hearing screening, evaluation

6 and intervention programs and systems. The pro7 gram shall develop standardized procedures for data

8 management and program effectiveness and costs,

9 such as—

10 (A) to ensure quality monitoring of new11 born and infant hearing loss screening, evalua12 tion, and intervention programs and systems;

13 (B) to provide technical assistance on data

14 collection and management;

15 (C) to study the costs and effectiveness of

16 newborn and infant hearing screening, evalua17 tion and intervention programs and systems

18 conducted by State-based programs in order to

19 answer issues of importance to state and na20 tional policymakers;

21 (D) to identify the causes and risk factors

22 for congenital hearing loss;

23 (E) to study the effectiveness of newborn

24 and infant hearing screening, audiologic and

25 medical evaluations and intervention programs
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1 and systems by assessing the health, intellectual

2 and social developmental, cognitive, and lan3 guage status of these children at school age;

4 and

5 (F) to promote the sharing of data regard6 ing early hearing loss with state-based birth de7 fects and developmental disabilities monitoring

8 programs for the purpose of identifying pre9 viously unknown causes of hearing loss.

10 (2) NATIONAL INSTITUTES OF HEALTH.—

11 Under the existing authority of the Public Health

12 Service Act, the Director of the National Institutes

13 of Health, acting through the Director of the Na14 tional Institute on Deafness and Other Communica15 tion Disorders, shall for purposes of this section,

16 continue a program of research and development on

17 the efficacy of new screening techniques and tech18 nology, including clinical studies of screening meth19 ods, studies on efficacy of intervention, and related

20 research.

21 (e) COORDINATION AND COLLABORATION.—

22 (1) IN GENERAL.—Under the existing authority

23 of the Public Health Service Act, in carrying out

24 programs under this section, the Administrator of

25 the Health Resources and Services Administration,
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1 the Director of the Centers for Disease Control and

2 Prevention, and the Director of the National Insti3 tutes of Health shall collaborate and consult with

4 other Federal agencies; State and local agencies, in5 cluding those responsible for early intervention serv6 ices pursuant to Title XIX of the Social Security

7 Act (Medicaid Early and Periodic Screening, Diag8 nosis and Treatment Program); Title XXI of the So9 cial Security Act (State Children’s Health Insurance

10 Program); Title V of the Social Security Act (Mater11 nal and Child Health Block Grant Program; and

12 Part C of the Individuals with Disabilities Education

13 Act); consumer groups of and that serve individuals

14 who are deaf and hard-of-hearing and their families;

15 appropriate national medical and other health and

16 education specialty organizations; persons who are

17 deaf and hard-of-hearing and their families; other

18 qualified professional personnel who are proficient in

19 deaf or hard-of-hearing children’s language and who

20 possess the specialized knowledge, skills, and at21 tributes needed to serve deaf and hard-of-hearing

22 newborns, infants, toddlers, children, and their fami23 lies; third-party payers and managed care organiza24 tions; and related commercial industries.
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1 (2) POLICY DEVELOPMENT.—Under the exist2 ing authority of the Public Health Service Act, the

3 Administrator of the Health Resources and Services

4 Administration, the Director of the Centers for Dis5 ease Control and Prevention, and the Director of the

6 National Institutes of Health shall coordinate and

7 collaborate on recommendations for policy develop8 ment at the Federal and state levels and with the

9 private sector, including consumer, medical and

10 other health and education professional-based orga11 nizations, with respect to newborn and infant hear12 ing screening, evaluation and intervention programs

13 and systems.

14 (3) STATE EARLY DETECTION, DIAGNOSIS, AND

15 INTERVENTION PROGRAMS AND SYSTEMS; DATA COL16 LECTION.—Under the existing authority of the Pub17 lic Health Service Act, the Administrator of the

18 Health Resources and Services Administration and

19 the Director of the Centers for Disease Control and

20 Prevention shall coordinate and collaborate in assist21 ing States to establish newborn and infant hearing

22 screening, evaluation and intervention programs and

23 systems under subsection (c) and to develop a data

24 collection system under subsection (d).
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1 (f) RULE OF CONSTRUCTION.—Nothing in this Act

2 shall be construed to preempt any State law.

3 (g) AUTHORIZATION OF APPROPRIATIONS.—

4 (1) STATEWIDE NEWBORN AND INFANT HEAR5 ING SCREENING, EVALUATION AND INTERVENTION

6 PROGRAMS AND SYSTEMS.—For the purpose of car7 rying out subsection (c) under the existing authority

8 of the Public Health Service Act, there are author9 ized to the Health Resources and Services Adminis10 tration appropriations in the amount of $5,000,000

11 for fiscal year 2000, $8,000,000 for fiscal year

12 2001, and such sums as may be necessary for fiscal

13 year 2002.

14 (2) TECHNICAL ASSISTANCE, DATA MANAGE15 MENT, AND APPLIED RESEARCH; CENTERS FOR DIS16 EASE CONTROL AND PREVENTION.—For the purpose

17 of carrying out subsection (d)(1) under the existing

18 authority of the Public Health Service Act, there are

19 authorized to the Centers for Disease Control and

20 Prevention, appropriations in the amount of

21 $5,000,000 for fiscal year 2000, $7,000,000 for fis22 cal year 2001, and such sums as may be necessary

23 for fiscal year 2002.

24 (3) TECHNICAL ASSISTANCE, DATA MANAGE25 MENT, AND APPLIED RESEARCH; NATIONAL INSTI-
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1 TUTE ON DEAFNESS AND OTHER COMMUNICATION

2 DISORDERS.—For the purpose of carrying out sub3 section (d)(2) under the existing authority of the

4 Public Health Service Act, there are authorized to

5 the National Institute on Deafness and Other Com6 munication Disorders appropriations for such sums

7 as may be necessary for each of the fiscal years

8 2000 through 2002.

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