Establishes the statewide group home families working group

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

• Democratic6

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

◆ The sponsor's argument

Why Patricia Fahy says this is needed

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

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.