Model Universal Newborn/Infant Hearing Screening, Tracking, and Intervention Bill

The Model Universal Newborn/Infant Hearing Screening, Tracking, and Intervention Bill was prepared with input from the American Speech-Language-Hearing Association, the American Academy of Audiology, and the Alexander Graham Bell Association for the Deaf, Inc.

Contents

An Act establishing a statewide universal Newborn/ Infant hearing screening, tracking, and intervention program; establishing an advisory board; and for other purposes:

Be it enacted by the senate and general assembly of the State of ______________:

Section 1. Short Title

This Act shall be known as the Universal Newborn/ Infant Hearing Screening, Tracking, and Intervention Act.

Section 2. Legislative Findings and Purposes

(A) Findings. The General Assembly finds as follows:

1. Hearing Loss occurs in Newborns more frequently than any other health condition for which Newborn screening is currently required;
   
2. Early detection of Hearing Loss in a child and early intervention and treatment before six months of age has been demonstrated to be highly effective in facilitating a child's healthy development in a manner consistent with the child's age and cognitive ability;
   
3. Eighty percent (80%) of a child's ability to learn speech, language and related cognitive skills is established by the time the child is thirty-six months of age, and hearing is vitally important to the healthy development of such language skills;
   
4. Children of all ages can receive reliable and valid screening for Hearing Loss in a cost-effective manner;
   
5. Appropriate screening and identification of Newborns and Infants with Hearing Loss will facilitate early intervention and treatment in the critical time period for language development, and may therefore serve the public purposes of promoting the healthy development of children, and reducing public expenditure for health care and special education, and related services;

(B) Purposes. The purpose of this legislation is:

1. To provide early detection of Hearing Loss in Newborn children at the birthing facility or as soon after birth as possible, to enable these children and their families/ care-givers to obtain needed multi-disciplinary evaluation, treatment, and intervention services at the earliest opportunity; and to prevent or mitigate the developmental delays and academic failures associated with late identification of Hearing Loss; and
   
2. To provide the State with the information necessary to effectively plan, establish, and evaluate a comprehensive system of appropriate services for Newborns and Infants who have a Hearing Loss or are deaf.

Section 3. Definitions

(A) The following terms used in this ACT shall have the meanings ascribed to them in this section unless expressly indicated otherwise:

"Birth Admission" means the time after birth that the Newborn remains in the hospital nursery prior to discharge.

"Board" means the State Newborn Hearing Screening, Tracking, and Intervention Advisory Board.

"Department" means the State Department of Health.

"Health Insurance Policy" means any group health insurance policy, contract, plan or any individual policy, contract or plan with dependent coverage for children, which provides medical coverage on an expense-incurred service or prepaidbasis. The term includes all of the following:

1. A health insurance policy or contract issued by a nonprofit corporation or Fraternal Benefit Society.
   
2. A health service plan operating as a Health Maintenance Organization, a Preferred Provider Organization, an Exclusive Provider Organization, or other managed care plan, as these terms may be defined in State law;
   
3. An employee welfare benefit plan as defined in section 3 of the Employee Retirement Income Security Act of 1974
   (Public Law 93-406, 88 Stat. 829).

"Hearing Loss" means a Hearing Loss of 30 dB HL or greater in the frequency region important for speech recognition and comprehension in one or both ears (approximately 500 through 4000 Hz). However, as technology allows for changes to this definition to allow for the detection of less severe Hearing Loss, the Board shall have the authority to modify it by rule.

"Infant(s)" means a child 30 days to 24 months old.

"Intervention and/or Follow-up Care" means the early intervention services described in Part H of the Individuals with Disabilities Education Act (IDEA) as amended by P.L. 105-17.

"Medical Assistance Program" means the State administered Medicaid program.

"Newborn(s)" means a child up to 29 days old.

"Parent(s)" means a natural Parent(s), stepparent(s), adoptive Parent(s), legal guardian(s) or other legal custodian of a child.

"Program" means the Universal Newborn/ Infant Hearing Screening, Tracking, and Intervention Program.

"Secretary" (Commissioner) means the Secretary (or Commissioner) of Health of this State.

Section 4. Newborn/ Infant Hearing Screening, Tracking and Intervention Advisory Board

(A) There is established the Newborn Hearing Screening and Intervention Advisory Board under the jurisdiction of the Department.

Section 5. Duties and Powers of the Board

(A) The Board shall advise the Secretary on issues relating to the Newborn hearing screening test, diagnostic hearing evaluation, intervention, treatment, and Follow-up care of Newborn children with a Hearing Loss. The Board shall act by majority vote, and as required by this State's Administrative Procedures Act. The Board shall have the authority to adopt rules to implement this Act.

(B) By November 1, 1999, Newborn hearing screening must be conducted on no fewer than eighty-five percent (85%) of the Newborns born in hospitals in this State on Birth Admission, using procedures recommended by the Board or their equivalent. Where a Newborn is delivered in a facility other than a hospital, the Parents must be instructed on the merits of having the hearing screening performed and be given information to assist them in having it performed within three months of the date of the child's birth.

(C) On or after November 1, 1997, every hospital in this State shall educate the Parents of Newborns born in such hospitals of the importance of screening the hearing of Newborns, and of receiving Follow-up care. This educational information shall explain, in lay terms, the process of hearing screening, the likelihood of their child having a Hearing Loss, Follow-up procedures, and community resources. The educational information also shall include a description of the normal auditory, speech, and language developmental process in children. Education shall not be considered a substitute for the hearing screening. The Board shall determine the appropriate screening venue(s) for infants who are born in facilities other than hospitals.

(D) Every hospital shall report annually to the Board concerning the following:

1. The number of Newborns born in the hospital;
   
2. The number of Newborns and Infants recommended for diagnostic audiologic evaluation; and
   
3. The number of Newborns screened on Birth Admission;
   
4. The number of Newborns who passed the Birth Admission screening, if administered;
   
5. The number of Newborns who did not pass the Birth Admission screening, if administered; and
   
6. The number of Newborns recommended for monitoring, intervention, and Follow-up care.
   
7. The number of Newborns and Infants who return for Follow-up rescreening; and
   
8. The number of Newborns and Infants who pass the Follow-up rescreening

(E) The Board shall determine which hospitals or other health care institutions in this State are administering hearing screening to Newborns and Infants on a voluntary basis and the number of Newborns and Infants screened. The Board shall report to the General Assembly by December 1, 1998, concerning the following:

1. The number of hospitals and other health care institutions administering voluntary screenings during Birth Admission;
   
2. The number of Newborns screened as compared to the total number of Newborns born in such hospitals and institutions;
   
3. The number of Newborns who passed the Birth Admission screening, if administered; and
   
4. The number of Newborns who did not pass the Birth Admission screening, if administered.
   
5. The number of Newborns recommended for Follow-up care.
   

(F) The Board shall meet as often as necessary to collect the information necessary and report to the General Assembly by December 1, 1998, and annually thereafter. In addition, the Board shall develop and make recommendations in a sufficiently timely manner to allow for Statewide universal hearing screening of Newborns and Infants by November 1, 1999.

(G) Subject to available appropriations, the Board shall make the report described in paragraphs E and F of this section available throughout the State, and specifically available to physicians whose practice includes the practice of obstetrics, neonatology, or the care of Newborns and Infants, to consumer groups, to managed care organizations, other third party payers, and to the media.

(H) If the number of Newborns and Infants screened does not equal or exceed eighty-five percent (85%) of the total number of Newborns born in this State on or before November 1, 1999, or falls below eighty-five percent (85%) at any time thereafter, the Department shall administer the screening of Newborns and Infants pursuant to this Act, and shall be reimbursed for such screenings from health insurance policies as defined herein. Notwithstanding the aforementioned, it shall be the goal of this State to achieve a one hundred percent (100%) screening rate.

(I) The Department shall provide administrative support services required by the Board. The members of the Board shall receive no compensation for their services as members, but may receive reimbursement for travel expenses incurred as a result of their duties as members of the Board.

Section 6. Composition of the Board

(A) The board shall be composed of an odd numbered membership of at least eleven members, appointed by the governor, from the following professions or organizations:

Section 7. Universal Newborn Hearing Screening Program

(A) In the event that eighty-five percent (85%) of Newborns and Infants born in this State are not being screened by November 1, 1999, or if at any time after that date the number of screenings drops below eighty five percent (85%) of all Newborns and Infants born in this State, then the Department shall immediately implement a program to provide the following:

1. A hearing screening test that every Newborn child shall undergo for identification of Newborn child Hearing Loss. A person properly trained, and supervised by a State-licensed audiologist may perform the hearing screening test.
2. The hearing screening test should be completed before discharge from a Newborn nursery unit, but no later than three months after birth. The test shall include the use of at least one of the following physiologic technologies: automated or diagnostic auditory brainstem response (ABR), otoacoustic emissions (OAE). New physiologic technologies or improvements to existing physiologic technologies that substantially enhance Newborn hearing assessment should be incorporated into this program as the Board finds appropriate.

Section 8. Intervention and Tracking Program

(A) The Board shall establish guidelines for the provision of Follow-up services for Newborn children in this State who have or are at risk of developing a Hearing Loss and are so identified. These services shall include, but are not limited to, confirmatory pediatric audiologic assessment and diagnosis of Newborns with abnormal or inconclusive test results, counseling and educational services for the Parent(s), and an explanation of the potential effects of the identified Hearing Loss on the development of the Newborn's speech, language, and cognitive skills as well as the potential benefits of early identification and intervention.

(B) The General Assembly recognizes that it is necessary to track children identified with a Hearing Loss for a period of time in order to render appropriate Follow-up care. Consequently, the Board is hereby authorized and directed to study and recommend to the Secretary, on or before December 31, 1998, the preferred methods currently available to track Newborns identified with a Hearing Loss. From the choice(s) provided by the Board, the Secretary shall then determine the most appropriate system for this State, and implement the Board's recommendation on or before November 1, 1999. It is the purpose of this subsection to facilitate the reporting of Newborns and Infants who may have or are at risk of developing a Hearing Loss. The reporting requirements shall be designed to be as simple as possible and easily completed by nonprofessional persons when necessary. It is the intent of the General Assembly that the tracking system, at a minimum, does the following:

1. Provide the Board, Department, and General Assembly with the information necessary to effectively plan and establish a comprehensive system of developmentally appropriate services for Newborns and Infants who are deaf or hard of hearing;
2. Reduce the likelihood of associated disabling conditions for such children; and
3. Develop the tracking system contemplated by this section in conjunction with other similar national systems, such as the system required by Part C of the IDEA.

(C) Once the tracking system is operational, all hospitals in the State and other providers of services that have established hearing screening procedures for Newborns and Infants and ages birth through three years shall report the existence of Newborns and Infants who fail to pass hearing screening procedures.

(D) The information compiled and maintained in the tracking system shall be kept confidential in accordance with the applicable requirements and provisions of Part C of IDEA. Parents of all registrants will be provided information on the availability of resources and services in the State for children with Hearing Loss, including those provided in accordance with IDEA through the Statewide tracking system created by this Act.

(E) Data obtained by the establishment of the tracking system that is taken directly from the medical records of a patient is for the confidential use of the Department and the persons or public or private entities that the Department determines are necessary to carry out the intent of the tracking system. The data is privileged and may not be divulged or made public in a manner that discloses the identity of an individual whose medical records have been used for obtaining data for the registry. Notwithstanding the above, anonymous statistical information collected under this section is public information.

1. (1) This tracking system should be integrated with any national database or similar system developed by the federal government.

(F) The following persons who act in compliance with this section are not civilly or criminally liable for furnishing information required by this section: a hospital, clinical laboratory or other health care facility, an audiologist, an administrator, officer or employee of a hospital or other health care facility, and a physician or employee of a physician.

Section 9. Insurance Coverage

(A) Except as provided below, any health insurance policy which is delivered, issued for delivery, renewed, extended or modified in this State by any health care insurer shall provide that the health insurance benefits applicable under the health insurance policy shall include coverage for initial screening and for any necessary audiologic diagnostic Follow-up care related to the Newborn hearing screening test described in this Act.

(B) Except as provided below, if a health insurance policy provides coverage or benefits to a resident of this State, it shall be deemed to be delivered in this State within the meaning of this Act regardless of whether the health care insurer issuing or delivering the policy is located within or outside this State.

(C) Benefits for the Newborn child hearing screening test and any necessary audiologic Follow-up care shall be subject to co-payment and coinsurance provisions of a health insurance policy to the extent that other medical services covered by the policy are subject to those provisions, except that benefits for the Newborn child hearing screening test shall be exempt from deductible or dollar limit provisions in the health insurance policy. This exemption must be explicitly provided for in the policy.

(D) Notwithstanding subsections (a) and (b), this section shall not be construed to require a health insurance policy to include coverage for the Newborn child hearing screening test for an individual who is a resident of this State if the individual is employed outside this State and the individual's employer maintains a health insurance policy for the individual as an employment benefit.

(E) This act shall apply to all insurance policies, individual and otherwise, subscriber contracts and group insurance certificates issued under any group master policy, delivered or issued for delivery on or after the effective date of this act. This act shall also apply to all renewals of contracts on any renewal date, which is on or after the effective date of this act.

Section 10. Medical Assistance

(A) The agency responsible for the administration of this State's Medicaid program shall pay for the Newborn/ Infant child hearing screening test, if the child is eligible for medical assistance as determined by State and federal law.

(B) The Governor shall ensure that any contract for the provision of Medical Assistance negotiated with a managed care organization as authorized by State law, shall include payment for Newborn/ Infant hearing screening testing and necessary audiologic Follow-up care.

Section 11. Miscellaneous Provisions

(A) No test is to be performed if the Parent of a Newborn dissents on the ground that the test conflicts with a personal religious belief or practice.

(B) The Secretary shall promulgate regulations as may be necessary to implement the provisions under Sections 4 through 11.

(C) The Insurance Commissioner shall promulgate regulations necessary to implement the provisions under section 10.

Section 12. Appropriation

(A) The General Assembly shall make any necessary appropriations to carry out the purposes of this Act.

Section 13. Effective Date

(A) This Act shall take effect immediately.