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CoronavirusDevelopmental DisabilitiesInformation and Resources

Input from Family/Caregivers of Individuals with IDD Needed on New York’s Response to COVID-19

We know that people with IDD and family members faced unique challenges during the pandemic.  We want to hear about your experiences, during the earlier days of the pandemic, so that the New York State Office for People With Developmental Disabilities (OPWDD) and other state agencies can be better prepared should another public health emergency occur in the future. 

The NYS Legislature has charged the independent Developmental Disabilities Advisory Council (DDAC) with preparing a report assessing New York’s response to COVID-19 relating to individuals with IDD.  The Developmental Disabilities Planning Council (DDPC) is assisting the DDAC in the preparation of the report.

This report will include an evaluation of policies, procedures, and programs that were implemented from March 2020 through April 2021 to determine the impact on safety for people with IDD. The report will also include feedback from stakeholder groups including self-advocates, family members/caregivers, providers, CCOs and underserved communities.

Survey for Families/Caregivers of Individuals with IDD

One of the important components of this report is a survey for family members/caregivers of individuals with IDD. As a family member/caregiver of a person with IDD, your voice is critical to making sure our report accurately represents the experiences that people with IDD and family members faced during the pandemic for the time period of March 2020 through April 2021. It is also essential that a wide variety of family members from various parts of the state and an array of backgrounds respond to the survey so the DDAC and DDPC get the most clear picture of the impact of the state’s actions.

The survey is about 10 minutes long. It’s completely voluntary and anonymous. You are free to skip any questions that you do not wish to answer.

Click here if you are interested in participating in the survey.

The survey will be open until May 16, 2022.

Thank you for your participation in this important effort.