Establishes a statewide residential families committee

Showing the cosponsors who are on Agora, A to Z. The official record may list more.

• Democratic3

Shown in neutral colors by design; Agora is non-partisan.

◆ The sponsor's argument

Why Shelley Mayer says this is needed

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 Sta

This is the sponsor's own case for the bill, quoted from their memorandum. It is not Agora's description of what the bill does.