BILL NUMBER:S3169

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 People
              

with 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 People with
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 OPWDD 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.