2025 -- H 5495

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LC001423

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     STATE OF RHODE ISLAND

IN GENERAL ASSEMBLY

JANUARY SESSION, A.D. 2025

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A N   A C T

RELATING TO HEALTH AND SAFETY -- MATERNAL AND CHILD HEALTH SERVICES

FOR CHILDREN WITH SPECIAL HEALTH CARE NEEDS

     Introduced By: Representative Rebecca M. Kislak

     Date Introduced: February 13, 2025

     Referred To: House Health & Human Services

     (Dept. of Health)

It is enacted by the General Assembly as follows:

     SECTION 1. Section 23-13-14 of the General Laws in Chapter 23-13 entitled "Maternal

and Child Health Services for Children with Special Health Care Needs" is hereby amended to read

as follows:

     23-13-14. Newborn screening program.

     (a) The physician, midwife, nurse practitioner, or physician assistant attending a newborn

child shall cause that child to be subject to newborn screening tests for metabolic, endocrine, and

hemoglobinopathy disorders, and other conditions for which there is a medical benefit to the early

detection and treatment of the disorder, and an assessment for developmental risk. The department

of health shall make rules and regulations pertaining to screenings, diagnostic, and treatment

services as accepted medical practice shall indicate. The rules and regulations shall include, at a

minimum, newborn screening tests for all disorders and conditions for which there is a medical

benefit to the early detection and treatment of the disorder or condition listed in the current version

of the federal Recommended Uniform Screening Panel (RUSP) issued by the Secretary of the U.S.

Department of Health and Human Services, and shall include newborn screening tests for all new

disorders or conditions for which there is a medical benefit to the early detection and treatment of

the disorder or condition added to the federal RUSP within two (2) years after the disorder or

condition is added; provided, if the director of health determines in writing that it is not practicable

to include a new disorder or condition within two (2) years, the time period may be extended for

the shortest amount of time necessary, as determined by the director. The provisions of this section

shall not apply if the parents of the child object to the tests on the grounds that those tests conflict

with their religious tenets and practices.

     (b) In addition, the department of health is authorized to establish by rule and regulation a

reasonable fee structure for the newborn screening and disease control program, which includes

but is not limited to, screening, diagnostic, and treatment services. The program shall be a covered

benefit and be reimbursable by all health insurers, as defined in § 27-38.2-2, providing health

insurance coverage in Rhode Island except for supplemental policies that only provide coverage

for specific diseases, hospital indemnity Medicare supplements, or other supplemental policies.

The department of human services shall pay for the program where the patient is eligible for

medical assistance under the provisions of chapter 8 of title 40. The charges for the program shall

be borne by the hospitals or other healthcare facilities where births occur in the absence of a third-

party payor. Nothing in this section shall preclude the hospital or healthcare facility from billing

the patient directly. The department of health is authorized to promulgate, by rule and regulation,

requirements for the storage, access, and use of residual newborn screening specimens and classify

data as protected health information. All personally identifiable information including records,

correspondence, and documents specific to individual newborns and newborn screening specimens

shall be used solely for purposes of the newborn screening program, such as medical intervention

and counseling. Access to de-identified information shall be limited to the department and persons

with a valid scientific interest and qualification as determined by the department, provided the

department and such persons are engaged in demographic, epidemiologic or other similar studies

related to health and agree, in writing, to maintain the confidentiality of such information as

prescribed in the federal Health Insurance Portability and Accountability Act of 1996 and chapter

37.3 of title 5 (“Confidentiality of health care information Act”). Newborn screening specimens

and newborn screening program information, records, reports, statements, notes, memoranda or

other data shall not be subjected to subpoena or discovery, nor shall it be admissible as evidence in

any action of any kind in any court or before any other tribunal, board, agency or person.

     (c) There is created within the general fund a restricted receipt account to be known as the

“newborn screening account” to implement the provisions of §§ 23-13-13 and 23-13-14. All funds

received pursuant to §§ 23-13-13 and 23-13-14 shall be deposited in the account. Funding dedicated

exclusively to implement the provisions of §§ 23-13-13 and 23-13-14 and received by the

department of health from sources other than those identified in §§ 23-13-13 and 23-13-14 may

also be deposited in the newborn screening account. The general treasurer is authorized and directed

to draw his or her orders on the account upon receipt of properly authenticated vouchers from the

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department of health.

     SECTION 2. This act shall take effect upon passage.

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EXPLANATION

BY THE LEGISLATIVE COUNCIL

OF

A N   A C T

RELATING TO HEALTH AND SAFETY -- MATERNAL AND CHILD HEALTH SERVICES

FOR CHILDREN WITH SPECIAL HEALTH CARE NEEDS

***

     This act would authorize a midwife, nurse practitioner or physician assistant attending a

newborn child to cause that child to be subject to newborn screening tests for metabolic, endocrine,

and hemoglobinopathy disorders, and other conditions for which there is a medical benefit to the

early detection and treatment of the disorder, and an assessment for developmental risk. It would

also authorize the department of health to promulgate rules and regulations requirements for the

storage, access, and use of residual newborn screening specimens and classify data as protected

health information.

     This act would take effect upon passage.

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