Establishes the statewide group home families working group; provides that duties include informing and advising the commissioner as to matters of importance for persons with developmental disabilities residing in group homes and their families and guardians, providing recommendations for statewide and regional priorities and goals for individuals residing in group homes and families and guardians of individuals residing in group homes, advising the commissioner on such other matters related to group homes as the statewide group home families working group deems relevant, holding regional public meetings to solicit and receive input from residents of group homes and family members and guardians of residents of group homes, and any matter relating to the performance of their duties with relation to individuals in group homes and on policies, Establishes the statewide group home families working group; provides that duties include informing and advising the commissioner as to matters of importance for persons with developmental disabilities residing in group homes and their families and guardians, providing recommendations for statewide and regional priorities and goals for individuals residing in group homes and families and guardians of individuals residing in group homes, advising the commissioner on such other matters related to group homes as the statewide group home families working group deems relevant, holding public meetings to solicit and receive input from residents of group homes and family members and guardians of residents of group homes, and any matter relating to the performance of their duties with relation to individuals in group homes and on policies, goals, budget and operation of group homes.
NEW YORK STATE ASSEMBLY MEMORANDUM IN SUPPORT OF LEGISLATION submitted in accordance with Assembly Rule III, Sec 1(f)
BILL NUMBER: A1130A
SPONSOR: Santabarbara 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 find- ings, 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 gambl-
ing disorders. Section 4 provides for statewide group homes families
working group review of such five-year plan and reporting of its recom-
mendations 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 develop- mental 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 disa-
bility rights advocates in March of 2021 found further pinpointed some
of the issues contributing to the heartbreaking 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 questions 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 ' establishing a new channel for more open and effective communi-
cation 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 ho me 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 Develop-
mental Disabilities, the Legislature, and the Governor through. report-
ing, and by collaborating with relevant government entities to establish
the communication necessary for improving the operation of group homes
serving persons with developmental disabilities. Sources: (1) Landes,
Scott D. et al., "COVID-19 outcomes among people with intellectual 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 Develop-
mental Disabilities (I/DD) Behind," March 12, 2021, available at:
https://www.drny.orgipage/pressreleases-27.html
PRIOR. LEGISLATIVE HISTORY:
2021-2022: Vetoed by Governor
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.
