BILL NUMBER: S7484

SPONSOR: MAYER
 
TITLE OF BILL:

An act to amend the mental hygiene law, in relation to establishing a
statewide residential families committee

 
PURPOSE OF BILL:

To establish a residential families committee within the Developmental
Disabilities Advisory Council that will hold regional meetings to solic-
it feedback from residents and their families and guardians on the oper-
ation of community residences, intermediate care facilities, and other
residential facilities for the care and treatment of persons with devel-
opmental disabilities; inform and advise the commissioner on matters of
concern to residents and their families; and provide recommendations for
statewide and regional priorities and goals.

 
SUMMARY OF SPECIFIC PROVISIONS:

Section 1 amends section 13.05 of the Mental Hygiene Law to require the
              

establishment of a statewide residential families committee within the
Developmental Disabilities Advisory Council whose members shall be
persons with developmental disabilities residing in community resi-
dences, intermediate care facilities, or other residential facilities
for the care and treatment of persons with developmental disabilities,
or family members or guardians of persons with developmental disabili-
ties residing in such residences or facilities. Section 1 also provides
that no member of the residential families committee shall have an
ownership or other interest in the entity operating the residence or
facility, and lays out the duties of the committee, including: 1)
informing and advising the commissioner on matters of importance to
residents and their families; 2) providing recommendations for statewide
and regional priorities and goals for residents; and 3) holding regional
public meetings to solicit and receive input from residents and their
families regarding the operation of facilities including, but not limit-
ed to, care provided and financial matters.

Section 2 sets the effective date.

 
JUSTIFICATION:

During the COVID-19 pandemic, persons with developmental disabilities
living in residential group homes were more at risk than the general
population. One study analyzing data from the first few months of the
pandemic found that the COVID-19 case rate was 7,841 per 100,000 as
compared to 1,910 per 100,000 for the general population of New York
State, that the case-fatality rate was 15% as compared to 7.9% in the
general population of New York State, and that the mortality rate was
1,175 per 100,000 as compared to 151 per 100,000 for the general popu-
lation of New York State. (1)

An investigatory report released by disability rights advocates in March
of 2021 highlighted several issues facing these individuals and their
families that were exacerbated by the pandemic. Among its findings, the
report's authors identified pervasive communication failures on the part
of the Office for People with Developmental Disabilities (OPWDD). (3)
The release of information by the state was generally constrained, and
channels for communication were limited for families, advocates, and
other stakeholders. The report stated that "New York State has consist-
ently withheld from the public vital information about COVID-19
infections and deaths amongst individuals residing in group homes or the
staff who support them" and further noted that OPWDD failed to "employ
best methods for anticipating and responding to potential questions from
its divergent stakeholder groups."

While the pandemic brought these communication issues into stark relief,
family members of persons with developmental disabilities have long
shared their frustration that they do not have adequate channels to
bring attention to problems faced by those residing in community resi-
dences, intermediate care facilities, or other residential facilities,
and to find solutions.

Families face difficulties communicating not just with government agen-
cies responsible for oversight, but also with organizations providing
services. The lack of adequate communication channels has a significant
impact on resident health, quality of life, and relationships with fami-
ly members and guardians. The state must do more to serve this under-
served population, and establishing a new channel for more open and
effective communication is a step in the right direction.

An 2022 bill addressing this issue, S7377/A9162, which passed both hous-
es, was vetoed by the Governor. That bill would have established a stan-
dalone statewide group home families working group. In her veto message,
which addressed this bill along with thirty-eight others, Governor
Hochul stated that she "share(d) a strong interest in addressing the
problems and issues identified in this legislation," but expressed
concerns about "duplication and unnecessary bureaucracy." She
"direct 
ED state agencies that have ongoing efforts or future plans to
address the issues described in these bills to continue their efforts
and to review and incorporate the goals in the legislation to the extent
practicable." (4)

Rather than create a new standalone working group, this bill would
require the Developmental Disabilities Advisory Council to establish, as
one of its committees, a statewide residential families committee, thus
avoiding duplication and unnecessary bureaucracy.

The residential families committee will ensure that the voices of resi-
dents, family members, and guardians are heard within the Developmental
Disabilities Advisory Council, and by the Office for People with Devel-
opmental Disabilities, the Legislature, and the Governor.

Sources:

(1) Landes, Scott D. et al., "COVID-19 outcomes among people with intel-
lectual and developmental disability living in residential group homes
in New York State," Disability and Health Journal, 13(4) (October 2020),
https://www. sciencedirect.com/science /article/pii/S193665742030100X.

(2) Disability Rights New York, New York Civil Liberties Union, and New
York Lawyers for the Public Interest, "New York State's Response to
Protect People with Intellectual and Developmental Disabilities in Group
Homes during the COVID-19 Pandemic," March 5, 2021,
https://www.nylpi.org/press-release-new-york-states-

response-to-the-covid-19-pandemic-leaves-individuals-with-intellectual-
and-developmental-disabilities-i-dd-behind/

(3) S7377/A9162, Governor's Veto 78 of 2022.

 
PRIOR LEGISLATIVE HISTORY:

2022: 57377 / A9162, similar bill, passed Senate and Assembly, vetoed by
Governor.

 
FISCAL IMPLICATIONS:

To be determined

 
EFFECTIVE DATE:
The bill shall take effect on the sixtieth day after it shall have
become a law.