BILL NUMBER: S7794
SPONSOR: FAHY
 
TITLE OF BILL:
An act to amend the mental hygiene law, in relation to establishing the
statewide group home families working group
 
PURPOSE OR GENERAL IDEA OF BILL:
To establish a working group within the Office for People with Develop-
mental Disabilities that will hold meetings to solicit feedback on the
operation of group homes from residents of group homes and their fami-
lies and guardians, including but not limited to comments regarding care
and financial matters, to improve communication between the state and
group home residents and their families and guardians.
 
SUMMARY OF PROVISIONS:
Section 1 defines the term "group home"-as a community residence serving
people with developmental disabilities. Section 2 establishes the state-
wide group homes families working group, to be composed of eleven
members selected by the legislature from among residents of group homes
and families and guardians of residents of group homes.
Section 2 also sets out the duties of the statewide group homes families
working group, including (1) holding public meetings in order to solicit
feedback regarding group homes with an emphasis on residents, family,
and guardians, (2) reporting on its findings, and (3) developing advice
and recommendations related to group home operations. Section 3 requires
the consideration and discussion of recommendations of the statewide
group homes families working group in the statutorily required five-year
plan formulated by the Office for People with Developmental Disabilities
and the Office for Addiction Services and Supports for provision of
services for persons with mental illness, developmental disabilities,
and those affected by substance abuse or compulsive gambling disorders.
Section 4 provides for statewide group homes families working group
review of such five-year plan and reporting of its recommendations
regarding such five-year plan. Section 5 sets the effective date.
 
JUSTIFICATION:
Unfortunately, residents of group homes serving persons with develop-
mental disabilities need a better forum for providing feedback to the
state regarding operation of residential group homes. Existing channels
for input from residents and their families and guardians have not
resulted in the necessary conveyance of feedback to state government or
adequate responses to issues raised. This situation has been further
exposed and exacerbated by the COVID-19 pandemic. This is particularly
alarming because, persons with developmental disabilities living in
group homes are far 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-fa-
tality 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 population of New York
State. (1) Other reports from early 2021 indicate that well over 10,000
group home staff have become infected with COVID-19 and that a number of
them have died as well. (2)
An investigatory report released by disability rights advocates in March
of 2021 further pinpointed some of the issues contributing to the heart-
breaking effects of COVID-19 on these individuals. Among its findings,
the report 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,
the channels for communication were limited for families, advocates, and
other stakeholders, and the report states that "New York State has
consistently withheld from the public vital information about COVID-19
infections and deaths amongst individuals residing in group homes or the
staff who support them." The report further noted that OPWDD failed to
"employ best methods for anticipating and responding to potential ques-
tions from its divergent stakeholder groups."
Sadly, many families have voiced communications problems regarding group
homes for many years, not only with government, but also with other
organizations involved in the delivery of care. The consequences of
these difficulties include significant impacts on group home health,
quality of life, and relationships with family members and guardians.
The state must do more to serve this underserved population and estab-
lishing a new channel for more open and effective communication with
state government is a step in the right direction. This bill creates a
new working group composed of stakeholders which is dedicated to hearing
directly from group home residents and their families and guardians at
annual regional meetings across the state. The working group is
entrusted with guaranteeing that voices of residents, family members,
and guardians are heard by the Office for People with Developmental
Disabilities, the Legislature, and the Governor through reporting, and
by collaborating with relevant government entities to establish the
communication necessary for improving the operation of group homes serv-
ing persons with developmental disabilities.
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) (2020).
(2) Cutler, Nancy, "Group homes told to take back COVID- positive
'asymptomatic' residents; more than 1.5% died," Rockland/Westchester
Journal News, Feb. 26, 2021.
(3) Disability Rights New York, New-York Civil Liberties Union, and New.
York Lawyers for the Public Interest, "New York State's Response to the
COVID-19 Pandemic Leaves Individuals with Intellectual and Developmental
Disabilities (I/DD) Behind," March 12, 2021,
https://www.drny.orgipage/pressreleases27.html
 
PRIOR LEGISLATIVE HISTORY:
2022-2023: A159
2021-2022: A 9162/ S7377
 
FISCAL IMPLICATIONS FOR STATE AND LOCAL GOVERNMENTS:
To be determined.
 
EFFECTIVE DATE:
The provisions of the bill shall take effect sixty days after becoming
law.

Statutes affected:
S7794: 13.03 mental hygiene law, 5.07 mental hygiene law