On December 21, 2021, Governor Kathy Hochul signed New York State (NYS) Senate Bill S.6294A into law tasking the NYS Developmental Disabilities Advisory Council (DDAC) to evaluate the prior administration’s response to the COVID-19 pandemic for people with IDD, specifically: review the state’s response to the pandemic as it relates to the IDD community during the timeframe of March 1, 2020, to April 1, 2021; and provide recommendations to the NYS Legislature and Governor to improve the state’s response to better address the needs of people with IDD in future emergencies. The report was issued to the Governor and Legislature last week.
We will never forget the ways the families of Parent to Parent of NYS came together during the pandemic to support each other through the sharing of information and encouragement. We heard stories of unbelievable challenge and uncertainty, but also stories of remarkable endurance, creativity, and resilience. During that time we were also in conversation with, and witness to, the incredible efforts being made by our partners in the NYS Office for People with Developmental Disabilities, CCOs, and provider agencies who were working tirelessly over an extended period of crisis to ensure the safety and wellbeing of the individuals they serve, along with the stabilization of our systems of care. And none of their efforts would have been possible without the heroic efforts of our Direct Support Professional workforce.
With the assistance of the Developmental Disabilities Planning Council (DDPC), the DDAC was able to engage in a remarkable stakeholder outreach effort to inform the creation of this report. Over two thousand two hundred (2,200) stakeholders provided input by responding to surveys and participating in focus groups developed in consultation with family caregivers and self-advocates. Surveys were available in five languages, in addition to English, and efforts were made to ensure responses included representation from various subgroups within the IDD community such as family members of people with IDD who lived in a certified setting, lived independently or with family members, received self-direction services, had complex behavioral needs or were medically fragile.
The full report, Assessing New York State’s Response to COVID-19 for People with Intellectual and Developmental Disabilities can be found here:
An accessible version of the report is also available:
If you participated in any one of the many stakeholder engagement opportunities, Parent to Parent of NYS sincerely thanks you. Your stories and your voices matter immensely. We recognize that continuing to show up to raise your voice can be a challenge in and of itself, but your efforts to inform future crisis response in New York State for our sons, daughters, and those we care about is a gift to all the family caregivers who will follow after us.
Michele Juda, Executive Director