Authorizes consumer advisory board to make health care decisions for certain developmentally disabled persons who resided at the former Willowbrook state school

Title of bill

An act to amend the surrogate's court procedure act, in relation to authorizing the consumer advisory board to make health care decisions for certain residents of the former Willowbrook state school

Purpose of the bill

This bill would amend the Surrogate's Court Procedure Act (SCPA) to authorize the Consumer Advisory Board (CAB) to make end-of-life decisions for persons with developmental disabilities resided at the Willowbrook State School as of March 17, 1972 or those 104 individuals who were in community care status on that date and subsequently returned to Willowbrook or a related facility ("Willowbrook Class members") who lack capacity to make their own health care decisions.

Summary of provisions

Section 1 of the bill would amend SCPA § 1750-b(1)(a) and (b) to authorize the CAB to make decisions regarding the withholding or withdrawing of life-sustaining treatment for Willowbrook Class members who are fully represented by the CAB and who have no guardian or r qualified family member to make such a decision on their behalf and to give the Commissioner of the Office of Mental Retardation an d Developmental Disabilities the discretion to promulgate regulations, with the advice of the CAB, to implement this bill. This section on would also make a technical correction to delete "court" from the name of the surrogate decision-making committee.

Section 2 of the bill provides for an immediate effective date.

Existing law

SCPA § 1750-b(1)(a) authorizes qualified family members or the surrogate decision-making committee to make certain decisions on behalf of a person with developmental disabilities who lacks capacity to make his or her own health care decisions, including the decision to withhold or withdraw life-sustaining treatment.

SCPA § 1750-b(1)(b) authorizes the Commissioner of Mental Retardation and Developmental Disabilities to promulgate regulations establishing the prioritized list of family members who are authorized to make decisions regarding the withholding or withdrawing of life-sustaining treatment.

Prior legislative history

This is a new proposal.

Statement in support

In the last several years, legislation has been enacted which expands the authority for end-of-life health care decisions. Chapter 105 of the Laws of 2007 authorized qualified family members to make such decisions when the individual had no legal guardian. Subsequently, Chapter 262 of the Laws of 2008 authorized surrogate decision making committees to make major medical treatment decisions, including end-of-life decisions, for individuals with developmental disabilities who lack capacity to make their own health care decisions and who had no qualified family member or legal guardian.

This bill would provide authority for the CAB to make end-of-life decisions for Willowbrook class members. The CAB was created by the Willowbrook Consent Decree to advocate for Willowbrook Class consumers, particularly those who cannot advocate for themselves or have no active family members or legal guardians to represent their interests. The CAB is already authorized to make major health care decisions for Willowbrook Class members they fully represent, except for end-of-life health care decisions. This bill would allow for the CAB to also make end-of-life decisions for persons they represent, where there is no qualified family member or legal guardian, and where the CAB has the most extensive knowledge of the person's health care needs and desires. The Commissioner of OMRDD is also authorized to develop regulations, with advice from the CAB to implement this provision.

Budget implications

This proposal is expected to have a minimal fiscal impact.

Effective date

This bill would take effect immediately.