A 8648: Extends the provisions of the family health care decisions act in the public health law to health care decisions for patients with intellectual or developmental disabilities.

  
  STATE OF NEW YORK ________________________________________________________________________ 8648 2025-2026 Regular Sessions  IN ASSEMBLY May 22, 2025 ___________ Introduced by M. of A. LAVINE -- read once and referred to the Committee on Health AN ACT to and the public health law and the surrogate's court procedure act, in relation to extending the family health care decisions act to health care decisions for patients with intellectual or developmental disabilities; and to repeal certain provisions of the surrogate's court procedure act relating thereto The People of the State of New York, represented in Senate and Assem- bly, do enact as follows: 1 Section 1. Subdivision 3 of section 2994-b of the public health law, 2 as amended by chapter 708 of the laws of 2019, the opening paragraph as 3 amended by chapter 40 of the laws of 2024, is amended to read as 4 follows: 5 3. Prior to seeking or relying upon a health care decision by a surro- 6 gate for a patient under this article, if [the attending practitioner 7 has reason to believe that the patient has a history of receiving 8 services for an intellectual or developmental disability; it reasonably 9 appears to the attending practitioner that the patient has an intellec- 10 tual or developmental disability; or] the practitioner in a general 11 hospital has reason to believe that the patient has been temporarily 12 transferred from a mental hygiene facility operated or licensed by the 13 office of mental health [or the office for people with developmental 14 disabilities, then such physician, nurse practitioner or physician 15 assistant shall make reasonable efforts to determine whether paragraph 16 (a), (b) or (c) of this subdivision is applicable: 17 (a) If the patient has a guardian appointed by a court pursuant to 18 article seventeen-A of the surrogate's court procedure act, health care 19 decisions for the patient shall be governed by section seventeen hundred 20 fifty-b of the surrogate's court procedure act and not by this article. 21 (b) If a patient does not have a guardian appointed by a court pursu- 22 ant to article seventeen-A of the surrogate's court procedure act but EXPLANATION--Matter in italics (underscored) is new; matter in brackets [ ] is old law to be omitted. LBD13049-01-5 
 A. 8648 2 1 falls within the class of persons described in paragraph (a) of subdivi- 2 sion one of section seventeen hundred fifty-b of such act, decisions to 3 withdraw or withhold life-sustaining treatment for the patient shall be 4 governed by section seventeen hundred fifty-b of the surrogate's court 5 procedure act and not by this article. 6 (c) If a health care decision for a patient cannot be made under para- 7 graphs (a) or (b) of this subdivision, but] and that consent for the 8 decision may be provided pursuant to the mental hygiene law or regu- 9 lations of the office of mental health [or the office for people with 10 developmental disabilities], then the decision shall be governed by such 11 statute or regulations and not by this article. 12 § 2. Subdivision 1 and paragraph (a) of subdivision 4 of section 13 2994-c of the public health law, as added by chapter 8 of the laws of 14 2010, are amended to read as follows: 15 1. Presumption of capacity. For purposes of this article, every adult 16 shall be presumed to have decision-making capacity unless: 17 (a) determined otherwise pursuant to this section or pursuant to court 18 order[,]; or [unless] 19 (b) a guardian is authorized to decide about health care for the adult 20 pursuant to article eighty-one of the mental hygiene law; or 21 (c) a guardian has been appointed for the adult pursuant to article 22 seventeen-A of the surrogate's court procedure act. 23 (a) to the patient, where there is any indication of the patient's 24 ability to comprehend the information, provided that such notice to a 25 patient with an intellectual or developmental disability is governed by 26 subdivision one of section twenty-nine hundred ninety-four-h of this 27 article; 28 § 3. Subdivision 1 and paragraph (a) of subdivision 5 of section 29 2994-d of the public health law, subdivision 1 as added by chapter 8 of 30 the laws of 2010, paragraph (a) of subdivision 5 as amended by chapter 31 708 of the laws of 2019, are amended to read as follows: 32 1. Identifying the surrogate. One person from the following list from 33 the class highest in priority when persons in prior classes are not 34 reasonably available, willing, and competent to act, shall be the surro- 35 gate for an adult patient who lacks decision-making capacity. However, 36 such person may designate any other person on the list to be surrogate, 37 provided no one in a class higher in priority than the person designated 38 objects: 39 (a) A guardian authorized to decide about health care pursuant to 40 article eighty-one of the mental hygiene law or article seventeen-A of 41 the surrogate's court procedure act; 42 (b) The spouse, if not legally separated from the patient, or the 43 domestic partner; 44 (c) A [son or daughter] child eighteen years of age or older; 45 (d) A parent; 46 (e) A [brother or sister] sibling eighteen years of age or older; 47 (f) A close friend[.]; 48 (g) the Willowbrook consumer advisory board for members of the Willow- 49 brook class who are fully represented by the consumer advisory board, as 50 provided in section twenty-nine hundred ninety-four-h of this article; 51 (h) A surrogate decision-making committee under article eighty of the 52 mental hygiene law, for persons eligible for such decision-making, 53 provided that as an alternative such decision may also be made pursuant 54 to subdivision five of section twenty-nine hundred ninety-four-g of this 55 article. 
 A. 8648 3 1 (a)(i) Treatment would be an extraordinary burden to the patient and 2 an attending practitioner determines, with the independent concurrence 3 of another physician, nurse practitioner or physician assistant, that, 4 to a reasonable degree of medical certainty and in accord with accepted 5 medical standards, (A) the patient has an illness or injury which can be 6 expected to cause death within [six months] one year, whether or not 7 treatment is provided; or (B) the patient is permanently unconscious; or 8 (ii) The provision of treatment would involve such pain, suffering or 9 other burden that it would reasonably be deemed inhumane or extraor- 10 dinarily burdensome under the circumstances and the patient has an irre- 11 versible or incurable condition, other than mental illness or intellec- 12 tual or developmental disability, as determined by an attending 13 practitioner with the independent concurrence of another physician, 14 nurse practitioner or physician assistant to a reasonable degree of 15 medical certainty and in accord with accepted medical standards. 16 § 4. The public health law is amended by adding a new section 2994-h 17 to read as follows: 18 § 2994-h. Health care decisions for intellectually or developmentally 19 disabled persons. With respect to an intellectually or developmentally 20 disabled person: 21 1. Notice of a determination that a surrogate will make health care 22 decisions because the patient has been determined to lack decision-mak- 23 ing capacity shall promptly be given: 24 (a) to the patient unless, due to a medical condition other than an 25 intellectual or developmental disability (such as unconsciousness) it is 26 medically certain that the patient is unable to comprehend the informa- 27 tion; and 28 (b) as otherwise provided by paragraph (a) of subdivision four of 29 section twenty-nine hundred ninety-four-c of this article. 30 2. No health care decision shall be influenced in any way by a 31 presumption that people with an intellectual or developmental disability 32 are not entitled to the full and equal rights, equal protection, 33 respect, medical care and dignity afforded to people without an intel- 34 lectual or developmental disability. 35 3. For an intellectually or developmentally disabled person, at least 36 forty-eight hours prior to the implementation of a decision to withdraw 37 life-sustaining treatment, or at the earliest possible time prior to the 38 implementation of a decision to withhold life-sustaining treatment, the 39 attending practitioner shall notify: 40 (a) the intellectually or developmentally disabled person unless, due 41 to a medical condition other than intellectual or developmental disabil- 42 ity (such as unconsciousness) it is medically certain that the patient 43 is unable to comprehend the information; 44 (b) if the person is in or was transferred from a residential facility 45 operated, licensed or authorized by the office for people with develop- 46 mental disabilities, the chief executive officer of the agency or organ- 47 ization operating such facility and the mental hygiene legal services; 48 and 49 (c) if the person is not in and was not transferred from such a facil- 50 ity or program, the commissioner of the office for people with develop- 51 mental disabilities, or their designee. 52 4. Agencies or organizations described above and mental hygiene legal 53 service: 54 (a) must adopt and disclose upon request a practical means to be noti- 55 fied at any time by an attending practitioner; 56 (b) may waive the right to be notified at any time; and 
 A. 8648 4 1 (c) after notice of a proposed withdrawal of life sustaining treat- 2 ment, should respond as soon as reasonably possible. If all notified 3 parties respond that they do not object, the decision may be implemented 4 without regard to the forty-eight hour notification period. 5 5. An inability to notify an agency or organization or the mental 6 hygiene legal service after a good faith attempt to do so, or the 7 absence of a response from any such entity after notification, shall not 8 require a delay in the issuance of an order not to resuscitate. 9 6. (a) If an agency, organization or mental hygiene legal service 10 participates in the treatment meeting at which a decision by a surrogate 11 is made to withdraw or withhold life-sustaining treatment, such partic- 12 ipation shall be considered notice to the participating party for 13 purposes of paragraph (b) of subdivision three of this section and no 14 further notice to such entity shall be necessary, but all rights to 15 object are preserved. 16 (b) For purposes of this paragraph, a "treatment meeting" is a meeting 17 (in person, or by any other means allowing communication by all partic- 18 ipants) to review treatment options with and obtain a decision by the 19 surrogate pursuant to this article, and that includes the attending 20 practitioner, the surrogate, at least one other health or social 21 services practitioner involved in provision of care to the patient, and 22 such other persons as the attending practitioner or surrogate might 23 invite for this purpose. The treatment meeting shall be documented in 24 the medical record. 25 7. (a) A health care decision made pursuant to this article shall be 26 suspended, pending judicial review or withdrawal of the objection, 27 except if the suspension would in reasonable medical judgment be likely 28 to result in the death of the intellectually or developmentally disabled 29 person, in the event of an objection to that decision at any time by 30 persons entitled to notification under subdivision one of this section. 31 (b) Such objection shall occur orally or in writing. Notwithstanding 32 the foregoing, in cases where the attending practitioner has notified 33 the agency or organization and the mental hygiene legal service of the 34 entry of an order not to resuscitate pursuant to subdivision one of this 35 section, and if such notice includes either the practitioner's state- 36 ment of the diagnostic and prognostic basis for the medical determi- 37 nation in support of the order or an excerpt from the patient's medical 38 record that is sufficient to support such determination, (i) an order 39 not to resuscitate shall not be stayed by an objection by such persons 40 unless the objection is accompanied by a written statement by the 41 objecting party setting forth a basis for asserting that a standard in 42 this article for entering such an order has not been met; and (ii) if 43 the basis relates to the failure to meet medical criteria in this arti- 44 cle for the issuance of the order, the written statement must be based 45 on information from or consultation with a physician, physician's 46 assistant or nurse practitioner. 47 8. For purposes of the surrogate priority list under section twenty- 48 nine hundred ninety-four-d of this article, the Willowbrook consumer 49 advisory board shall be the surrogate for any person who was a resident 50 of the former Willowbrook state school on March seventeenth, nineteen 51 hundred seventy-two, and for those individuals who were in community 52 care status on that date and subsequently returned to Willowbrook or a 53 related facility, who are fully represented by the consumer advisory 54 board and who have no guardians appointed, and where persons in classes 55 described in paragraphs (a), (b), (c), (d), (e) and (f) of subdivision 56 one of section twenty-nine hundred ninety-four-d of this article are not 
 A. 8648 5 1 reasonably available, willing, and competent to act. However, with 2 respect to a decision to withdraw or withhold life-sustaining treatment, 3 as an alternative, such decision may also be made pursuant to subdivi- 4 sion five of section twenty-nine hundred ninety-four-g of this article. 5 § 5. Section 2994-m of the public health law is amended by adding two 6 new subdivisions 7 and 8 to read as follows: 7 7. Surrogate decision-making committees. A decision by a surrogate 8 decision-making committee described in article eighty of the mental 9 hygiene law for an intellectually or developmentally disabled person in 10 any setting shall not be subject to review by an ethics review committee 11 or other dispute resolution process described in this section. 12 8. Special proceeding. Nothing in this section shall preclude a person 13 connected with the case from seeking judicial relief from a court of 14 competent jurisdiction before, during or after an ethics committee 15 review. 16 § 6. Subdivision 1 of section 2994-t of the public health law, as 17 added by chapter 8 of the laws of 2010, is amended to read as follows: 18 1. The commissioner, in collaboration with the commissioner of the 19 office of mental health and the commissioner of the office for people 20 with developmental disabilities, shall establish such regulations as may 21 be necessary to implement this article. 22 § 7. Subdivision 26 of section 2994-a of the public health law, as 23 amended by chapter 619 of the laws of 2024, is amended to read as 24 follows: 25 26. "Person connected with the case" means the patient, any person on 26 the surrogate list, a parent or guardian of a minor patient, the hospi- 27 tal administrator, an attending practitioner, any other health or social 28 services practitioner who is or has been directly involved in the 29 patient's care, and any duly authorized state agency, including the 30 facility director or regional director for a patient transferred from a 31 mental hygiene facility and the facility director for a patient trans- 32 ferred from a correctional facility and any person entitled to notice 33 under section twenty-nine hundred ninety-four-h of this article, relat- 34 ing to decisions to withdraw or withhold life sustaining treatment for 35 intellectually or developmentally disabled persons. 36 § 8. Subdivision 6 of section 2994-dd of the public health law, as 37 amended by chapter 29 of the laws of 2025, is amended to read as 38 follows: 39 6. (a) The commissioner may authorize the use of one or more alterna- 40 tive forms for issuing a nonhospital order not to resuscitate (in place 41 of the standard form prescribed by the commissioner under subdivision 42 two of this section). Such alternative form or forms may also be used to 43 issue a non-hospital do not intubate order. 44 (b) Any such alternative forms intended for use for persons with 45 developmental disabilities or persons with mental illness who are inca- 46 pable of making their own health care decisions or who have a guardian 47 of the person appointed pursuant to article eighty-one of the mental 48 hygiene law or article seventeen-A of the surrogate's court procedure 49 act must also be approved by the commissioner of developmental disabili- 50 ties or the commissioner of mental health, as appropriate. 51 (c) An alternative form under this subdivision shall otherwise conform 52 with applicable federal and state law. 53 (d) A medical order for life-sustaining treatment (MOLST) form in the 54 version previously approved by the commissioner, and the commissioners 55 of mental health and the office for people with developmental disabili- 56 ties, meets the requirements of this section, provided that the commis- 
 A. 8648 6 1 sioner may authorize updated versions of the MOLST form as needed, 2 subject to paragraph (b) of this subdivision. The MOLST form and guid- 3 ance and checklists for using the MOLST form for any patient in any 4 setting shall be posted on the department's website. 5 (e) This subdivision does not limit, restrict or impair the use of an 6 alternative form for issuing an order not to resuscitate in a general 7 hospital or residential health care facility under article twenty-eight 8 of this chapter or a hospital under subdivision ten of section 1.03 of 9 the mental hygiene law [or a facility certified or operated by the 10 office for people with developmental disabilities]. 11 § 9. Section 1750-b of the surrogate's court procedure act is REPEALED 12 and a new section 1750-b is added to read as follows: 13 § 1750-b. Life-sustaining treatment decisions for persons with intellec- 14 tual or developmental disabilities 15 1. Decisions to withdraw or withhold life-sustaining treatment for 16 persons who have been found, pursuant to the provisions of this article, 17 to lack capacity to make health care decisions, or for persons for whom 18 no guardian has been appointed pursuant to section seventeen hundred 19 fifty or seventeen hundred fifty-a of this article, but who have an 20 intellectual or developmental disability, as defined in section 1.03 of 21 the mental hygiene law shall be governed by: 22 (a) article twenty-nine-C of the public health law (health care agents 23 and proxies) if applicable; or 24 (b) article twenty-nine-CCC of the public health law with respect to 25 nonhospital orders not to resuscitate if applicable; or 26 (c) article twenty-nine-CC of the public health law, for all other 27 health care decisions, without regard to where the decision is made or 28 where the care is provided. 29 2. With respect to decisions made pursuant to subdivision one of this 30 section, outside of a hospital or hospice as those terms are defined in 31 section twenty-nine hundred ninety-four-a of the public health law: 32 (a) "attending practitioner" shall mean a practitioner who has primary 33 responsibility for the treatment and care of the patient. Where more 34 than one practitioner shares such responsibility, or where a practition- 35 er is acting on the attending practitioner's behalf, any such practi- 36 tioner may act as an attending practitioner pursuant to this article; 37 and 38 (b) the commissioner of the office for people with developmental disa- 39 bilities may promulgate regulations setting forth a process for the 40 resolution of disputes, provided that in a residential facility licensed 41 or operated by the office for people with developmental disabilities 42 such process shall include review by a committee similar to the ethics 43 review committee, but with composition and procedures promulgated by the 44 commissioner of such office. 45 § 10. This act shall take effect on the ninetieth day after it shall 46 have become a law.