Update Disability Health Care Law

Section 1. Section 1750-b of the surrogate's court procedure act, as amended by chapter 198 of the laws of 2016, is amended to read as follows: § 1750-b. Health care decisions for persons [who are intellectually

disabled] with developmental disabilities

1. Scope of authority. As used in this section, the terms "developmental disability" and "developmentally disabled" shall have the meaning set forth in subdivision twenty-two of section 1.03 of the mental hygiene law. Unless specifically prohibited by the court after consideration of the determination, if any, regarding a person [who is intellectually disabled's] with a developmental disability's capacity to make health care decisions, which is required by section seventeen hundred fifty of this article, the guardian of such person appointed pursuant to section seventeen hundred fifty of this article shall have the authority to make any and all health care decisions, as defined by subdivision six of section twenty-nine hundred eighty of the public health law, on behalf of the person [who is intellectually disabled] with a developmental disability that such person could make if such person had capacity. Such decisions may include decisions to withhold or withdraw lifesustaining treatment. For purposes of this section, "life-sustaining treatment" means medical treatment, including cardiopulmonary resuscitation, intubation and/or mechanical ventilation and nutrition and hydration provided by means of medical treatment, which is or would be

EXPLANATION--Matter in italics (underscored) is new; matter in brackets

[ ] is old law to be omitted.

LBD03920-01-7

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sustaining life functions and without which, according to reasonable medical judgment, the patient will die within a relatively short time period. Cardiopulmonary resuscitation is presumed to be life-sustaining treatment without the necessity of a medical judgment by an attending physician. The provisions of this article are not intended to permit or promote suicide, assisted suicide or euthanasia; accordingly, nothing in this section shall be construed to permit a guardian to consent to any act or omission to which the person [who is intellectually disabled] with a developmental disability could not consent if such person had capacity.

(a) For the purposes of making a decision to withhold or withdraw life-sustaining treatment pursuant to this section, in the case of a person for whom no guardian has been appointed pursuant to section seventeen hundred fifty or seventeen hundred fifty-a of this article, a "guardian" shall also mean a family member of a person who [(i) has intellectual disability, or (ii)] has a developmental disability, as defined in section 1.03 of the mental hygiene law, which [(A) includes intellectual disability, or (B)] results in [a similar] an impairment of general intellectual functioning or adaptive behavior so that such person is incapable of managing himself or herself, and/or his or her affairs by reason of such developmental disability. Qualified family members shall be included in a prioritized list of said family members pursuant to regulations established by the commissioner of the office for people with developmental disabilities. Such family members must have a significant and ongoing involvement in a person's life so as to have sufficient knowledge of their needs and, when reasonably known or ascertainable, the person's wishes, including moral and religious beliefs. In the case of a person who was a resident of the former Willowbrook state school on March seventeenth, nineteen hundred seventy-two and those individuals who were in community care status on that date and subsequently returned to Willowbrook or a related facility, who are fully represented by the consumer advisory board and who have no guardians appointed pursuant to this article or have no qualified family members to make such a decision, then a "guardian" shall also mean the Willowbrook consumer advisory board. A decision of such family member or the Willowbrook consumer advisory board to withhold or withdraw lifesustaining treatment shall be subject to all of the protections, procedures and safeguards which apply to the decision of a guardian to withhold or withdraw life-sustaining treatment pursuant to this section.

In the case of a person for whom no guardian has been appointed pursuant to this article or for whom there is no qualified family member or the Willowbrook consumer advisory board available to make such a decision, a "guardian" shall also mean, notwithstanding the definitions in section 80.03 of the mental hygiene law, a surrogate decision-making committee, as defined in article eighty of the mental hygiene law. All declarations and procedures, including expedited procedures, to comply with this section shall be established by regulations promulgated by the [commission on quality of care and advocacy for persons with disabilities] justice center for the protection of people with special needs, as established by article twenty of the executive law.

(b) Regulations establishing the prioritized list of qualified family members required by paragraph (a) of this subdivision shall be developed by the commissioner of the office for people with developmental disabilities in conjunction with parents, advocates and family members of persons [who are intellectually disabled] with developmental disabilities. Regulations to implement the authority of the Willowbrook consumer

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advisory board pursuant to paragraph (a) of this subdivision may be promulgated by the commissioner of the office for people with developmental disabilities with advice from the Willowbrook consumer advisory board.

(c) Notwithstanding any provision of law to the contrary, the formal determinations required pursuant to section seventeen hundred fifty of this article shall only apply to guardians appointed pursuant to section seventeen hundred fifty or seventeen hundred fifty-a of this article.

(d) A patient subject to this section who is found by the attending physician to have capacity to make his or her own health care decisions, pursuant to paragraph (a) of subdivision four of this section, upon notice to the chief executive officer of a residential facility operated, licensed or authorized by the office for people with developmental disabilities, in which facility the patient resides or from which he or she was transferred, and the mental hygiene legal service, may make his or her own decisions relating to life-sustaining treatment.

(e) A patient subject to this section who has a valid health care proxy at the time of a health care decision, including a decision involving life-sustaining treatment, shall have such decisions made in accordance with article twenty-nine-C of the public health law. If for any reason the agent or an alternate agent is not reasonably available, willing and competent to serve and the patient is otherwise eligible to have a decision as to life-sustaining treatment made pursuant to this section, any guardian or person or entity entitled to exercise the authority of a guardian under paragraph (a) of this subdivision may make such decision.

2. Decision-making standard. (a) The guardian shall base all advocacy and health care decision-making solely and exclusively on the best interests of the person [who is intellectually disabled] with a developmental disability and, when reasonably known or ascertainable with reasonable diligence, on [the person who is intellectually disabled's] such person's wishes, including moral and religious beliefs.

(b) An assessment of the person [who is intellectually disabled's] with a developmental disability's best interests shall include consideration of:

(i) the dignity and uniqueness of every person;

(ii) the preservation, improvement or restoration of the [person who is intellectually disabled's] person's health;

(iii) the relief of the [person who is intellectually disabled's] person's suffering by means of palliative care and pain management;

(iv) the unique nature of [artificially provided] nutrition or hydration provided by means of medical treatment, and the effect it may have on the person [who is intellectually disabled]; and

(v) the entire medical condition of the person.

(c) No health care decision shall be influenced in any way by:

(i) a presumption that persons [who are intellectually disabled] with developmental disabilities are not entitled to the full and equal rights, equal protection, respect, medical care and dignity afforded to persons without [an intellectual disability or a developmental disability] developmental disabilities; or

(ii) financial considerations of the guardian, as such considerations affect the guardian, a health care provider or any other party.

3. Right to receive information. Subject to the provisions of sections 33.13 and 33.16 of the mental hygiene law, the guardian shall have the right to receive all medical information and medical and clinical records necessary to make informed decisions regarding the person [who

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is intellectually disabled's] with a developmental disability's health care.

4. Life-sustaining treatment. The guardian shall have the affirmative obligation to advocate for the full and efficacious provision of health care, including life-sustaining treatment. In the event that a guardian [makes] initiates a decision to withdraw or withhold life-sustaining treatment from a person [who is intellectually disabled] with a developmental disability:

(a) The attending physician, as defined in subdivision two of section twenty-nine hundred eighty of the public health law, must confirm to a reasonable degree of medical certainty that the person [who is intellectually disabled] with a developmental disability lacks capacity to make health care decisions. The determination thereof shall be included in the [person who is intellectually disabled's] person's medical record, and shall contain such attending physician's opinion regarding the cause and nature of the [person who is intellectually disabled's] person's incapacity as well as its extent and probable duration. The attending physician who makes the confirmation shall consult with another physician, or a licensed psychologist, to further confirm the [person who is intellectually disabled's] person's lack of capacity. The attending physician who makes the confirmation, or the physician or licensed psychologist with whom the attending physician consults, must (i) be employed by a developmental disabilities [services] regional office named in section 13.17 of the mental hygiene law or employed by the office for people with developmental disabilities to provide treatment and care to people with developmental disabilities, or (ii) have been employed for a minimum of two years to render care and service in a facility or program operated, licensed or authorized by the office for people with developmental disabilities, or (iii) have been approved by the commissioner of the office for people with developmental disabilities in accordance with regulations promulgated by such commissioner. Such regulations shall require that a physician or licensed psychologist possess specialized training or three years experience in treating [intellectual disability] people with developmental disabilities. A record of such consultation shall be included in the [person who is intellectually disabled's] person's medical record.

(b) The attending physician, as defined in subdivision two of section twenty-nine hundred eighty of the public health law, with the concurrence of another physician with whom such attending physician shall consult, must determine to a reasonable degree of medical certainty and note on the person [who is intellectually disabled's] with a developmental disability's chart that:

(i) the person [who is intellectually disabled] has a medical condition as follows:

A. a terminal condition, [as defined in subdivision twenty-three of section twenty-nine hundred sixty-one of the public health law] which shall mean an illness or injury from which there is no recovery, and which can reasonably be expected to cause death within one year; or

B. permanent unconsciousness; or

C. a medical condition other than such person's [intellectual] developmental disability which requires life-sustaining treatment, is irreversible and which will continue indefinitely; and

(ii) the life-sustaining treatment would impose an extraordinary burden on such person, in light of:

A. such person's medical condition, other than such person's [intellectual] developmental disability; and

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B. the expected outcome of the life-sustaining treatment, notwithstanding such person's [intellectual] developmental disability; and

(iii) in the case of a decision to withdraw or withhold artificially provided nutrition or hydration:

A. there is no reasonable hope of maintaining life; or

B. the artificially provided nutrition or hydration poses an extraordinary burden.