Requires health care professionals to report any diagnosis of autism spectrum disorder to a registry maintained by the department of health.
TITLE OF BILL: An act to amend the public health law, in relation to autism spectrum disorder reporting
PURPOSE OR GENERAL IDEA OF BILL: To establish a registry in the Department of Health for reporting diagnoses of autism spectrum disorders and maintaining such information to improve the current knowledge and understating of autism, to conduct thorough and complete epidemiological surveys of the disorder, to enable analysis of this problem, and to plan for and provide services to children with autism spectrum disorders and their families.
SUMMARY OF SPECIFIC PROVISIONS: Section 1 of the bill sets forth a legislative intent.
Section 2 of the bill adds a new Article 24-F to the public health law setting up the registry, reporting requirements and provisions to ensure confidentiality.
Section 3 of the bill provides for an effective date 120 days after enactment.
JUSTIFICATION: This bill establishes a central registry within the Department of Health, similar to that currently in place for other conditions such as cancer and birth defects, to maintain reports of diagnoses of autism spectrum disorder in New York State. With the most recent CDC study estimating that 1 in 150 children nationally now has autism, tracking cases of autism throughout the state will provided much needed information to improve the current understanding of autism, to conduct thorough and complete epidemiological surveys of the disorder, to enable analysis of this problem, and to plan for and provide services to children with autism spectrum disorders and their families.
PRIOR LEGISLATIVE HISTORY: 2011-12: S.2340/A.2300 Referred to Health 2010: A.10498 - Referred to Health 2009: S.369 - Referred to Health 2008: S.5469 - Referred to Health 2007: S.5469 - Referred to Health
FISCAL IMPLICATIONS: To be determined.
EFFECTIVE DATE: This act shall take effect on the one hundred twentieth day after it shall have become a law, provided that the commissioner of health is authorized to promulgate any and all rules and regulations and take any other measures necessary to implement this act on its effective date or before such date.
STATE OF NEW YORK ________________________________________________________________________ 475 2013-2014 Regular Sessions IN SENATE (PREFILED) January 9, 2013 ___________Introduced by Sen. KENNEDY -- 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 autism spectrum disorder reporting THE PEOPLE OF THE STATE OF NEW YORK, REPRESENTED IN SENATE AND ASSEM- BLY, DO ENACT AS FOLLOWS: Section 1. Legislative intent. The legislature finds that there is a clear need for great accuracy in reporting and gathering epidemiologic data on the incidence of autism spectrum disorders in New York state. Further, the legislature finds that the state currently requires that a number of other conditions, including cancer and birth defects, be reported and maintained in a central registry. A similar registry requirement for reporting diagnoses of autism spectrum disorders and maintaining such information is needed to improve the current knowledge and understanding of autism, to conduct thorough and complete epidemio- logic surveys of the disorder, to enable analysis of this problem, and to plan for and provide services to children with autism spectrum disor- ders and their families. S 2. The public health law is amended by adding a new article 24-F to read as follows: ARTICLE 24-F AUTISM SPECTRUM DISORDER REPORTING SECTION 2499-B. AUTISM SPECTRUM DISORDER; DUTY TO REPORT. 2499-C. REGISTRY AND REPORTING REQUIREMENTS. S 2499-B. AUTISM SPECTRUM DISORDER; DUTY TO REPORT. 1. EVERY PHYSICIAN OR PSYCHOLOGIST LICENSED PURSUANT TO ARTICLE ONE HUNDRED FIFTY-FOUR OF THE EDUCATION LAW, AND ANY OTHER HEALTH CARE PROFESSIONAL LICENSED PURSUANT TO TITLE EIGHT OF THE EDUCATION LAW WHO IS QUALIFIED BY TRAIN- ING TO MAKE THE DIAGNOSIS AND WHO THEN MAKES THE DIAGNOSIS THAT A CHILDEXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets [ ] is old law to be omitted. LBD00776-01-3 S. 475 2
IS AFFECTED WITH AUTISM SPECTRUM DISORDER SHALL REPORT SUCH DIAGNOSIS TO THE DEPARTMENT IN A FORM AND MANNER PRESCRIBED BY THE COMMISSIONER. 2. SUCH REPORT SHALL BE MADE IN WRITING AND SHALL INCLUDE, BUT NOT BE LIMITED TO, THE NAME AND ADDRESS OF THE PERSON SUBMITTING THE REPORT, THE NAME, AGE AND ADDRESS OF THE CHILD DIAGNOSED WITH AUTISM SPECTRUM DISORDER, AND ANY OTHER PERTINENT INFORMATION AS MAY BE REQUIRED BY THE COMMISSIONER, EXCEPT THAT IF THE CHILD'S PARENT OR GUARDIAN OBJECTS TO THE REPORTING OF THE CHILD'S DIAGNOSIS FOR ANY REASON, THE REPORT SHALL NOT INCLUDE ANY INFORMATION THAT COULD BE USED TO IDENTIFY THE CHILD. 3. THE COMMISSIONER SHALL SPECIFY PROCEDURES FOR HEALTH CARE PROFES- SIONALS TO INFORM CHILDREN'S PARENTS AND GUARDIANS OF THE REQUIREMENTS OF THIS SECTION, THE PURPOSE OF INCLUDING THIS INFORMATION IN A REGIS- TRY, AND THE OPTION TO REFUSE TO PERMIT THE REPORTING OF ANY INFORMATION THAT COULD BE USED TO IDENTIFY A CHILD. S 2499-C. REGISTRY AND REPORTING REQUIREMENTS. 1. THE DEPARTMENT, IN CONSULTATION WITH THE OFFICE FOR PEOPLE WITH DEVELOPMENTAL DISABILITIES, SHALL ESTABLISH AND MAINTAIN AN UP-TO-DATE REGISTRY WHICH SHALL INCLUDE A RECORD OF ALL REPORTED CASES OF AUTISM SPECTRUM DISORDER THAT OCCUR IN THE STATE AND ANY OTHER INFORMATION IT DEEMS RELEVANT AND APPROPRIATE IN ORDER TO CONDUCT THOROUGH AND COMPLETE EPIDEMIOLOGIC SURVEYS OF AUTISM SPECTRUM DISORDERS, TO ENABLE ANALYSIS OF THIS PROBLEM, AND TO PLAN FOR AND PROVIDE SERVICES TO CHILDREN WITH AUTISM SPECTRUM DISORDERS AND THEIR FAMILIES. 2. THE REPORTS MADE PURSUANT TO THIS ARTICLE ARE TO BE USED ONLY BY THE DEPARTMENT AND OTHER AGENCIES AS MAY BE DESIGNATED BY THE COMMIS- SIONER, INCLUDING THE OFFICE FOR PEOPLE WITH DEVELOPMENTAL DISABILITIES AND THE EDUCATION DEPARTMENT, AND SHALL NOT OTHERWISE BE DIVULGED OR MADE PUBLIC SO AS TO DISCLOSE THE IDENTITY OF THE PERSON TO WHOM THEY RELATE. A PHYSICIAN, PSYCHOLOGIST OR OTHER HEALTH CARE PROFESSIONAL PROVIDING INFORMATION TO THE DEPARTMENT PURSUANT TO THIS ARTICLE SHALL NOT BE DEEMED TO BE OR HELD LIABLE FOR DIVULGING CONFIDENTIAL INFORMA- TION. 3. NOTHING IN THIS ARTICLE SHALL BE CONSTRUED TO COMPEL A CHILD WHO HAS BEEN REPORTED AS AFFECTED WITH AN AUTISM SPECTRUM DISORDER TO SUBMIT TO A MEDICAL OR HEALTH EXAMINATION, OR SUPERVISION BY THE DEPARTMENT. S 3. This act shall take effect on the one hundred twentieth day after it shall have become a law. Provided that the commissioner of health is authorized to promulgate any and all rules and regulations and take any other measures necessary to implement this act on its effective date on or before such date.