Bill Text: NY A02461 | 2017-2018 | General Assembly | Introduced
Bill Title: Authorizes the department of health to establish a program for familial dysautonomia, Canavan's and Tay-Sachs disease screening and counseling and to provide grants and to enter into contracts with public and non-profit private entities to assist in such program; and provides that participation in such program shall be voluntary and all information shall be confidential.
Spectrum: Moderate Partisan Bill (Democrat 5-1)
Status: (Introduced - Dead) 2018-01-03 - referred to ways and means [A02461 Detail]
Download: New_York-2017-A02461-Introduced.html
STATE OF NEW YORK ________________________________________________________________________ 2461 2017-2018 Regular Sessions IN ASSEMBLY January 20, 2017 ___________ Introduced by M. of A. DINOWITZ, JAFFEE, HEVESI, ROSENTHAL, WEPRIN -- Multi-Sponsored by -- M. of A. CURRAN, McKEVITT -- read once and referred to the Committee on Health AN ACT to amend the public health law, in relation to the establishment of a program for familial dysautonomia, Canavan's disease and Tay- Sachs disease screening and counseling The People of the State of New York, represented in Senate and Assem- bly, do enact as follows: 1 Section 1. The public health law is amended by adding a new article 2 27-DDD to read as follows: 3 ARTICLE 27-DDD 4 PROGRAM FOR FAMILIAL DYSAUTONOMIA, CANAVAN'S DISEASE 5 AND TAY-SACHS DISEASE SCREENING AND COUNSELING 6 Section 2770. Legislative findings and declaration of purpose. 7 2771. Program for familial dysautonomia, Canavan's disease and 8 Tay-Sachs disease screening and counseling. 9 2772. Commissioner; functions, powers and duties. 10 2773. Costs. 11 2774. Voluntary participation. 12 2774-a. Application; administration as to grants and contracts. 13 2774-b. Confidentiality of information. 14 2774-c. Reports. 15 § 2770. Legislative findings and declaration of purpose. 1. The 16 legislature hereby finds and declares: 17 (a) that familial dysautonomia, Canavan's disease and Tay-Sachs 18 disease are debilitating, inheritable diseases that have affected many 19 citizens of the state; 20 (b) that familial dysautonomia, Canavan's disease and Tay-Sachs 21 disease are deadly and tragic burdens which are likely to strike one- 22 fourth of the children born to parents both of whom are familial dysau- 23 tonomia, Canavan's disease and Tay-Sachs disease carriers; EXPLANATION--Matter in italics (underscored) is new; matter in brackets [] is old law to be omitted. LBD03221-01-7A. 2461 2 1 (c) that efforts with respect to familial dysautonomia, Canavan's 2 disease and Tay-Sachs disease must be directed toward the education, 3 screening, and counseling of carriers of familial dysautonomia, 4 Canavan's disease and Tay-Sachs disease; 5 (d) that simple and inexpensive screening tests have been devised 6 which identify those who have the diseases or are familial dysautonomia, 7 Canavan's disease and Tay-Sachs disease carriers; 8 (e) that programs with respect to familial dysautonomia, Canavan's 9 disease and Tay-Sachs disease must be based entirely upon the voluntary 10 cooperation of the individuals involved; 11 (f) that the application of methods of screening and counseling with 12 respect to familial dysautonomia, Canavan's disease and Tay-Sachs 13 disease deserve the highest priority; and 14 (g) that the establishment of familial dysautonomia, Canavan's disease 15 and Tay-Sachs disease education, screening, and counseling programs will 16 be cost beneficial to the citizens of the state. 17 2. In order to preserve and protect the public health and welfare, the 18 legislature hereby declares as its purpose the establishment of a 19 program for familial dysautonomia, Canavan's disease and Tay-Sachs 20 disease screening and counseling. 21 § 2771. Program for familial dysautonomia, Canavan's disease and Tay- 22 Sachs disease screening and counseling. The commissioner shall estab- 23 lish within the department a program for familial dysautonomia, 24 Canavan's disease and Tay-Sachs disease screening and counseling for the 25 purposes of: 26 1. the establishment and operation of voluntary familial dysautonomia, 27 Canavan's disease and Tay-Sachs disease screening and counseling 28 programs, primarily through other existing health programs; and 29 2. the development of information and educational materials relating 30 to familial dysautonomia, Canavan's disease and Tay-Sachs disease, and 31 the dissemination of such information and materials to persons providing 32 health care and to the public generally. 33 § 2772. Commissioner; functions, powers and duties. In carrying out 34 the provisions of this article, the commissioner shall have the follow- 35 ing functions, powers and duties: 36 1. in his or her discretion, to make grants to and enter into 37 contracts with, public and nonprofit private entities for projects for 38 the establishment and operation of voluntary familial dysautonomia, 39 Canavan's disease and Tay-Sachs disease screening and counseling 40 programs; 41 2. to carry out a program to develop information and educational mate- 42 rials relating to familial dysautonomia, Canavan's disease and Tay-Sachs 43 disease and to disseminate such information and materials to persons 44 providing health care and to the public generally; 45 3. to make grants to public and nonprofit private entities and to 46 enter into contracts with public and private entities and individuals 47 for the purpose of effectuating the duty prescribed by subdivision two 48 of this section; 49 4. to adopt, promulgate, amend and rescind suitable rules and regu- 50 lations to carry out the provisions and purposes of this article; and 51 5. to exercise and perform such other functions, powers and duties as 52 are contained in this article or as may from time to time be conferred 53 or imposed by law. 54 § 2773. Costs. Costs incurred by the commissioner in making payments 55 pursuant to grants and contracts authorized by subdivisions one and 56 three of section twenty-seven hundred seventy-two of this article shallA. 2461 3 1 be payable, after submission of a voucher certified by the commissioner, 2 upon audit and warrant of the comptroller from moneys made available for 3 such purpose by appropriation. 4 § 2774. Voluntary participation. The participation by any individual 5 in any program or portion thereof established under this article shall 6 be wholly voluntary and shall not be a prerequisite to eligibility for 7 or receipt of any other service or assistance from, or to participation 8 in, any other program. 9 § 2774-a. Application; administration as to grants and contracts. 1. 10 A grant authorized by section twenty-seven hundred seventy-two of this 11 article may be made upon application to the commissioner at such time, 12 in such manner, upon such forms, containing and accompanied by such 13 information, as the commissioner shall deem necessary and, by regu- 14 lation, prescribe. 15 2. Notwithstanding the provisions of subdivision one of this section, 16 any application made pursuant to this section shall at least provide: 17 (a) that the programs and activities for which assistance under this 18 article is sought will be administered by or under the supervision of 19 the applicant; 20 (b) for strict confidentiality of all test results, medical records, 21 and other information regarding screening or counseling, except for (i) 22 such information as the patient (or his or her guardian) consents to be 23 released; or (ii) statistical data compiled without reference to the 24 identity of any such patient; 25 (c) for appropriate community representation in the development and 26 operation of any program funded by a grant under this article; 27 (d) in the case of an application for a grant authorized by subdivi- 28 sion one of section twenty-seven hundred seventy-two of this article, 29 assurances satisfactory to the commissioner that (i) the screening and 30 counseling services to be provided under the program for which the 31 application is made will be directed first to the blood relatives of 32 known familial dysautonomia, Canavan's disease or Tay-Sachs disease 33 victims; and second, to the high-risk population groups in which fami- 34 lial dysautonomia, Canavan's disease and Tay-Sachs disease occurs with 35 greatest frequency and especially to those persons in these groups who 36 are entering their childbearing years; and (ii) appropriate arrangements 37 have been made to provide genetic counseling to persons found to be 38 familial dysautonomia, Canavan's disease or Tay-Sachs carriers; 39 (e) for such fiscal control and fund accounting procedures as the 40 commissioner may deem necessary to assure proper disbursement of and 41 accounting for funds paid to the applicant pursuant to this article; and 42 (f) for making such reports in such form and containing such informa- 43 tion as the commissioner may, by regulation, reasonably require. 44 3. In making or entering into any grant or contract pursuant to this 45 article, the commissioner shall: 46 (a) take into account the number of persons to be served by the 47 program supported by such grant or contract and the extent to which 48 rapid and effective use will be made of funds under the grant or 49 contract; and 50 (b) give priority to programs operating in areas which the commission- 51 er determines to have the greatest number of persons in need of the 52 screening and counseling services provided under such programs. 53 § 2774-b. Confidentiality of information. All test results, medical 54 records and any other information regarding familial dysautonomia, 55 Canavan's disease and Tay-Sachs disease screening or counseling acquired 56 or made by a public or private entity or an individual under this arti-A. 2461 4 1 cle shall be kept confidential, and shall not be admissible as evidence 2 in an action or proceeding in any court or before any other tribunal, 3 board, agency or person; provided, however, that the provisions of this 4 section shall not apply to: 5 1. such information as the patient, or his or her guardian, consents 6 to be released; or 7 2. statistical data compiled without reference to the identity of any 8 such patient; or 9 3. such information as is released by written order of a court of 10 record, issued by such court after receipt of an application on appro- 11 priate notice and an opportunity for all relevant parties to be heard, 12 showing good cause for the following reasons: 13 (a) other ways of obtaining the information are not available or would 14 be ineffective; and 15 (b) there is a reasonable likelihood that the records will disclose 16 information of substantial value in a civil and/or criminal proceeding. 17 In any application brought under this subdivision, unless the court 18 orders all papers filed under seal, the subject of the record shall be 19 identified only by fictitious name, and the application and responding 20 papers shall not contain or otherwise disclose the subject's identity or 21 other confidential information. 22 § 2774-c. Reports. 1. The commissioner shall prepare and submit to the 23 governor and the legislature as soon as practicable after the enactment 24 of this article, but no later than one year following such enactment, a 25 comprehensive report on the administration of this article. 26 2. Such report shall contain such recommendations for additional 27 legislation as the commissioner deems necessary. 28 § 2. This act shall take effect on the one hundred eightieth day after 29 it shall have become a law, provided, however, that effective immediate- 30 ly, the addition, amendment and/or repeal of any rule or regulation 31 necessary for the implementation of this act on its effective date are 32 authorized and directed to be made and completed on or before such 33 effective date.
