S T A T E   O F   N E W   Y O R K
 ________________________________________________________________________
 
                                   2136
 
                        2019-2020 Regular Sessions
 
                             I N  S E N A T E
 
                             January 22, 2019
                                ___________
 
 Introduced  by  Sens.  SANDERS, FUNKE -- read twice and ordered printed,
   and when printed to be committed to the Committee on Health
 
 AN ACT to amend the public health law, in relation to  establishing  the
   infant vision information, education and wellness program
 
   THE  PEOPLE OF THE STATE OF NEW YORK, REPRESENTED IN SENATE AND ASSEM-
 BLY, DO ENACT AS FOLLOWS:
 
   Section 1. Short title. This act shall be known and may  be  cited  as
 the "Infant Vision Information, Education and Wellness Act".
   §  2.  Article  25 of the public health law is amended by adding a new
 title II-B to read as follows:
                                TITLE II-B
         INFANT VISION INFORMATION, EDUCATION AND WELLNESS PROGRAM
 SECTION 2560. DEFINITIONS.
         2561. NEWBORN VISION SCREENING ADVISORY COMMITTEE.
         2562. NEWBORN VISION SCREENING EDUCATION AND ASSESSMENT.
         2563. REPORTING AND REFERRAL.
         2564. CONFIDENTIALITY OF RECORDS.
         2565. REGULATORY AUTHORITY.
   § 2560. DEFINITIONS. THE FOLLOWING WORDS AND PHRASES, AS USED IN  THIS
 SECTION  SHALL  HAVE  THE  FOLLOWING MEANINGS UNLESS THE CONTEXT CLEARLY
 INDICATES OTHERWISE:
   1. "BIRTH ADMISSION" SHALL MEAN THE TIME AFTER BIRTH  THAT  A  NEWBORN
 REMAINS IN A HOSPITAL OR BIRTH CENTER PRIOR TO DISCHARGE.
   2.  "CHILD"  SHALL MEAN AN INDIVIDUAL WHO IS UNDER TWENTY-ONE YEARS OF
 AGE.
   3. "COMMITTEE" SHALL MEAN THE DEPARTMENT OF  HEALTH'S  NEWBORN  VISION
 SCREENING ADVISORY COMMITTEE.
   4.  "HEALTH  CARE FACILITY" SHALL MEAN A HOSPITAL PROVIDING CLINICALLY
 RELATED HEALTH SERVICES FOR OBSTETRICAL AND NEWBORN  CARE,  OR  A  BIRTH
 CENTER. THE TERM INCLUDES A HOSPITAL PROVIDING CLINICALLY RELATED HEALTH
 SERVICES FOR OBSTETRICAL AND NEWBORN CARE, OR A BIRTH CENTER OPERATED BY

  EXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets
                       [ ] is old law to be omitted.
              

                                                            LBD08145-01-9

 S. 2136                             2
 
 AN  AGENCY,  THE STATE OR LOCAL GOVERNMENT. THE TERM DOES NOT INCLUDE AN
 OFFICE USED PRIMARILY FOR PRIVATE OR GROUP PRACTICE BY HEALTH CARE PRAC-
 TITIONERS IF  NO  REVIEWABLE  CLINICALLY  RELATED  HEALTH  SERVICES  ARE
 OFFERED.
   5.  "INFANT"  SHALL  MEAN A CHILD THIRTY DAYS OF AGE UP TO TWENTY-FOUR
 MONTHS OF AGE.
   6. "NEWBORN" SHALL MEAN A CHILD UP TO AND INCLUDING  TWENTY-NINE  DAYS
 OF AGE.
   7.  "PARENT" SHALL MEAN A NATURAL PARENT, STEPPARENT, ADOPTIVE PARENT,
 LEGAL GUARDIAN OR LEGAL CUSTODIAN OF A CHILD.
   8. "PROGRAM" SHALL MEAN THE INFANT VISION INFORMATION,  EDUCATION  AND
 WELLNESS PROGRAM.
   §  2561.  NEWBORN  VISION SCREENING ADVISORY COMMITTEE. 1. MEMBERSHIP.
 THE COMMISSIONER SHALL APPOINT A  SIX-MEMBER  NEWBORN  VISION  SCREENING
 ADVISORY COMMITTEE WITHIN THE DEPARTMENT. THE COMMITTEE SHALL:
   (A)  ADVISE AND MAKE RECOMMENDATIONS ON ISSUES RELATING TO THE FOLLOW-
 ING:
   (I) PROGRAM REGULATION AND ADMINISTRATION;
   (II) DIAGNOSTIC TESTING;
   (III) TECHNICAL SUPPORT;
   (IV) FOLLOW-UP.
   (B) BE COMPRISED OF MEMBERS WITH EXPERIENCE WITH INFANT EYE PATHOLOGY,
 PEDIATRIC OPHTHALMOLOGY,  OPTOMETRY  AND  COMMON  VISION  SCREENING  AND
 ASSESSMENT TESTS.
   2.  COMPENSATION.  MEMBERS SHALL SERVE WITHOUT COMPENSATION BUT MAY BE
 REIMBURSED FOR NECESSARY TRAVEL AND OTHER EXPENSES  IN  ACCORDANCE  WITH
 APPLICABLE LAW AND REGULATIONS.
   3.  PROTOCOL.  ON  OR  BEFORE JUNE THIRTIETH, TWO THOUSAND TWENTY, THE
 DEPARTMENT SHALL ADOPT THE PROTOCOL DEVELOPED BY THE AMERICAN ACADEMY OF
 PEDIATRICS TO OPTIMALLY DETECT  THE  PRESENCE  OF  TREATABLE  CAUSES  OF
 BLINDNESS  IN  INFANTS BY TWO MONTHS OF AGE. IF A PROTOCOL IS NOT DEVEL-
 OPED ON OR BEFORE SUCH DATE, THE DEPARTMENT, IN  CONSULTATION  WITH  THE
 COMMITTEE,  SHALL  ESTABLISH A PROTOCOL TO OPTIMALLY DETECT THE PRESENCE
 OF TREATABLE CAUSES OF BLINDNESS IN INFANTS BY TWO MONTHS OF AGE  ON  OR
 BEFORE JANUARY FIRST, TWO THOUSAND TWENTY-ONE.
   §  2562. NEWBORN VISION SCREENING EDUCATION AND ASSESSMENT. 1.  ESTAB-
 LISHMENT. THE DEPARTMENT SHALL ESTABLISH THE INFANT VISION  INFORMATION,
 EDUCATION AND WELLNESS PROGRAM, CONSISTING OF THE FOLLOWING COMPONENTS:
   (A)  A  SYSTEM  TO  SCREEN EACH NEWBORN IN THE STATE FOR VISION ABNOR-
 MALITIES BEFORE LEAVING A HOSPITAL.
   (B) A SYSTEM TO SCREEN EACH NEWBORN WHO IS  NOT  BORN  IN  A  HOSPITAL
 WITHIN THE FIRST THIRTY DAYS OF LIFE.
   (C)  A SYSTEM TO PROVIDE INFORMATION AND INSTRUCTION TO THE PARENTS OF
 EACH NEWBORN AND  INFANT  ON  THE  MERITS  OF  HAVING  VISION  SCREENING
 PERFORMED AND RECEIVING FOLLOW-UP CARE.
   2.  PROGRAM  ADMINISTRATION. THE DEPARTMENT SHALL, IN COOPERATION WITH
 THE COMMITTEE, PROVIDE TECHNICAL  SUPPORT,  INCLUDING  OPHTHALMOLOGICAL,
 OPTOMETRIC  AND  ADMINISTRATIVE  TECHNICAL  SUPPORT,  TO THE HEALTH CARE
 FACILITIES AND INDIVIDUALS IMPLEMENTING THE REQUIREMENTS OF  SUBDIVISION
 ONE OF THIS SECTION.
   3. REFUSAL OF TEST. SCREENING SHALL NOT BE REQUIRED IF A PARENT OF THE
 NEWBORN  OR  INFANT OBJECTS TO THE SCREENING FOR ANY REASON. THE REFUSAL
 MUST BE DOCUMENTED IN WRITING, MADE A PART OF THE MEDICAL RECORD OF  THE
 NEWBORN  OR INFANT AND REPORTED TO THE DEPARTMENT IN A MANNER PRESCRIBED
 BY THE DEPARTMENT.
   4. IMPLEMENTATION. THE PROGRAM SHALL BE IMPLEMENTED AS FOLLOWS:

 S. 2136                             3
 
   (A) BY JULY FIRST, TWO THOUSAND TWENTY-ONE, NEWBORN AND INFANT  VISION
 SCREENING  SHALL  BE CONDUCTED ON EACH LIVE BIRTH IN HEALTH CARE FACILI-
 TIES IN THE STATE DURING BIRTH ADMISSIONS USING  PROCEDURES  RECOMMENDED
 BY  THE  DEPARTMENT'S ADVISORY COMMITTEE, EXCEPT AS PROVIDED IN SUBDIVI-
 SION  THREE  OF  THIS  SECTION. IF A NEWBORN IS BORN IN A LOCATION OTHER
 THAN A HOSPITAL, THE PARENTS MUST BE INSTRUCTED ON THE MERITS OF  HAVING
 THE  VISION  SCREENING  PERFORMED  AND  GIVEN  INFORMATION TO ASSIST THE
 PARENTS IN HAVING THE SCREENING PERFORMED  WITHIN  THIRTY  DAYS  OF  THE
 NEWBORN'S  BIRTH. THE DEPARTMENT SHALL DETERMINE THE APPROPRIATE SCREEN-
 ING VENUE FOR A NEWBORN BORN OUTSIDE A HOSPITAL.
   (B) IF THE NUMBER OF NEWBORNS AND INFANTS RECEIVING  VISION  SCREENING
 DOES  NOT EQUAL AT LEAST EIGHTY-FIVE PERCENT OF THE TOTAL NUMBER OF LIVE
 BIRTHS IN THE STATE ON JULY FIRST, TWO THOUSAND TWENTY-ONE, AS SHOWN  IN
 THE  MOST RECENT DATA COLLECTED BY THE DEPARTMENT OR FALLS BELOW EIGHTY-
 FIVE PERCENT ANNUALLY AFTER JULY FIRST,  TWO  THOUSAND  TWENTY-ONE,  THE
 DEPARTMENT IN CONSULTATION WITH THE ADVISORY COMMITTEE SHALL IMMEDIATELY
 PROMULGATE  REGULATIONS TO IMPLEMENT A STATE-ADMINISTERED VISION SCREEN-
 ING PROGRAM.
   (C) BY JULY FIRST, TWO THOUSAND TWENTY, EACH HEALTH CARE  FACILITY  IN
 THE STATE SHALL PROVIDE INFORMATION AND INSTRUCT THE PARENTS OF NEWBORNS
 AND  INFANTS  CONCERNING  THE  IMPORTANCE  OF  SCREENING  THE  VISION OF
 NEWBORNS AND INFANTS AND OF RECEIVING FOLLOW-UP  CARE.  THE  INFORMATION
 SHALL BE AS FOLLOWS:
   (I) AN INFORMATIONAL PAMPHLET DEVELOPED AND SUPPLIED BY THE DEPARTMENT
 SHALL EXPLAIN IN LAY TERMS ALL OF THE FOLLOWING:
   (A) THE IMPORTANCE AND PROCESS OF VISION SCREENING.
   (B) THE LIKELIHOOD OF A NEWBORN OR INFANT HAVING VISION ABNORMALITIES.
   (C) FOLLOW-UP PROCEDURES AND AVAILABLE EARLY INTERVENTION SERVICES.
   (D)  A DESCRIPTION OF THE NORMAL VISION DEVELOPMENTAL PROCESS IN CHIL-
 DREN.
   (II) THE INFORMATION UNDER SUBPARAGRAPH (I) OF  THIS  PARAGRAPH  SHALL
 NOT  PRECLUDE THE HEALTH CARE FACILITY FROM PROVIDING ADDITIONAL MATERI-
 AL.
   (III) THE INFORMATION MAY NOT  BE  CONSIDERED  A  SUBSTITUTE  FOR  THE
 VISION SCREENING.
   (D)  BY  JULY  FIRST, TWO THOUSAND TWENTY, EVERY HOSPITAL IN THE STATE
 SHALL REPORT TO THE DEPARTMENT, IN A MANNER PRESCRIBED  BY  THE  DEPART-
 MENT, THE NUMBER OF NEWBORNS AND INFANTS SCREENED AND THE RESULTS OF THE
 SCREENING. THE DEPARTMENT, BASED ON THE INFORMATION, SHALL REPORT TO THE
 LEGISLATURE BY JANUARY FIRST, TWO THOUSAND TWENTY-ONE, AND EVERY JANUARY
 FIRST THEREAFTER, THE FOLLOWING:
   (I)  THE NUMBER OF HOSPITALS CONDUCTING VISION SCREENINGS DURING BIRTH
 ADMISSIONS.
   (II) THE NUMBER OF LIVE BIRTHS IN HOSPITALS.
   (III) THE NUMBER OF NEWBORNS SCREENED DURING BIRTH ADMISSIONS.
   (IV) THE NUMBER OF LIVE BIRTHS IN A LOCATION OTHER THAN A HOSPITAL.
   (V) THE NUMBER OF NEWBORNS BORN IN A LOCATION OTHER  THAN  A  HOSPITAL
 WHO WERE SCREENED WITHIN THIRTY DAYS OF THE DATE OF BIRTH.
   (VI)  THE  NUMBER  OF  NEWBORNS  BORN IN A HOSPITAL WHO PASSED AND THE
 NUMBER WHO DID NOT PASS THE BIRTH ADMISSION SCREENING, IF ADMINISTERED.
   (VII) THE NUMBER OF NEWBORNS BORN IN A LOCATION OTHER THAN A  HOSPITAL
 WHO  PASSED  AND  THE  NUMBER WHO DID NOT PASS A SCREENING WITHIN THIRTY
 DAYS OF THE DATE OF BIRTH, IF ADMINISTERED.
   (VIII) THE NUMBER OF INFANTS WHO RETURNED FOR FOLLOW-UP RESCREENING.
   (IX) THE NUMBER OF INFANTS WHO PASSED THE FOLLOW-UP RESCREENING.

 S. 2136                             4

   (X) THE NUMBER OF INFANTS RECOMMENDED FOR MONITORING, INTERVENTION AND
 FOLLOW UP CARE.
   §  2563.  REPORTING  AND  REFERRAL.    1. DUTIES. THE DEPARTMENT SHALL
 IMPLEMENT A REPORTING AND REFERRAL SYSTEM THAT LINKS  VISION  SCREENING,
 IF  NECESSARY,  WITH  OPTOMETRIC  AND  OPTHALMOLOGIST SERVICES AND OTHER
 EARLY INTERVENTION SERVICES. THE STATE MAY DO ALL THE FOLLOWING:
   (A) IDENTIFY ONE HUNDRED PERCENT OF NEWBORNS AND INFANTS  WITH  VISION
 ABNORMALITIES WITHIN THIRTY DAYS OF THE DATE OF BIRTH.
   (B) PROVIDE TIMELY ASSESSMENT IF INDICATED.
   (C) PROVIDE APPROPRIATE REFERRAL FOR TREATMENT AND INTERVENTION BEFORE
 THE AGE OF SIX MONTHS.
   2.  PROGRAM ADMINISTRATION. THE DEPARTMENT SHALL, IN CONSULTATION WITH
 THE COMMITTEE, PROVIDE ADMINISTRATIVE TECHNICAL SUPPORT TO  THE  FACILI-
 TIES  IMPLEMENTING  THE REPORTING AND EARLY INTERVENTION REFERRAL SYSTEM
 UNDER THIS SECTION.
   3. IMPLEMENTATION. THE DEPARTMENT, IN CONSULTATION WITH THE COMMITTEE,
 SHALL ISSUE TEMPORARY GUIDELINES BY JULY  FIRST,  TWO  THOUSAND  TWENTY,
 IMPLEMENTING  A  REPORTING  AND  EARLY  INTERVENTION REFERRAL SYSTEM FOR
 NEWBORNS, INFANTS AND CHILDREN WHO HAVE  BEEN  RECOMMENDED  FOR  FURTHER
 ASSESSMENT. THE TEMPORARY GUIDELINES SHALL EXPIRE ON JUNE THIRTIETH, TWO
 THOUSAND TWENTY-ONE.
   § 2564. CONFIDENTIALITY OF RECORDS.  1. LIMITATIONS. A PERSON, EMPLOY-
 EE  OR  AGENT OF A PERSON WHO OBTAINS INFORMATION UNDER THIS ACT MAY NOT
 DISCLOSE THE INFORMATION EXCEPT TO THE PARENT OF THE INFANT OR CHILD  OR
 TO  THE  DEPARTMENT  FOR  STATISTICAL  RECORDKEEPING  OR FOR APPROPRIATE
 TREATMENT REFERRAL AND EARLY INTERVENTION SERVICES.
   2. CONFIDENTIALITY. DATA OBTAINED DIRECTLY FROM THE MEDICAL RECORDS OF
 A PATIENT SHALL BE CONSIDERED CONFIDENTIAL AND SHALL BE FOR  THE  CONFI-
 DENTIAL  USE OF THE DEPARTMENT IN MAINTAINING THE TRACKING SYSTEM AND IN
 PROVIDING APPROPRIATE SERVICES. THE INFORMATION SHALL BE PRIVILEGED  AND
 MAY  NOT  BE  DIVULGED  OR  MADE PUBLIC IN ANY MANNER THAT DISCLOSES THE
 IDENTITY OF THE PATIENT.
   A PERSON WHO ACTS IN GOOD FAITH IN  COMPLYING  WITH  THIS  SECTION  BY
 REPORTING  NEWBORN AND INFANT VISION SCREENING RESULTS TO THE DEPARTMENT
 MAY NOT BE HELD CIVILLY OR CRIMINALLY LIABLE FOR FURNISHING THE INFORMA-
 TION REQUIRED BY THIS TITLE.
   § 2565. REGULATORY AUTHORITY. THE  DEPARTMENT  SHALL  PROMULGATE  SUCH
 RULES AND REGULATIONS AS MAY BE NECESSARY TO IMPLEMENT THE PROVISIONS OF
 THIS TITLE.
   §  3.  This  act shall take effect on the ninetieth day after it shall
 have become a law.    Effective  immediately,  the  addition,  amendment
 and/or repeal of any rule or regulation necessary for the implementation
 of  this  act  on  its  effective  date  are  authorized  to be made and
 completed on or before such effective date.