The New York Alliance for Inclusion and Innovation (New York Alliance), supported by funding from the New York State Council on Developmental Disabilities, wants to learn more about housing for people with intellectual or developmental disabilities (I/DD) in New York State. We are creating new housing resources and looking for better ways to help people with I/DD live where they choose.

We are especially interested in learning what happens when a parent, family member, or other close supporter is not available or no longer able to provide as much help as they once did.

This survey is the first step in our research. We want to hear from people receiving support and services, family members, and others who provide support.

We will ask about:

· Current housing situation
· Plans for the future
· Housing-related supports and services needed
· Concerns and ideas about future housing and support needs

Your responses are important and will help us better understand the housing needs, goals, and experiences of people with I/DD. Every response helps us learn more about what is working well, what challenges people face, and what supports may be needed in the future.

Taking part in this survey is completely voluntary. Thank you for taking the time to share your experiences, ideas, and perspectives. Your feedback will help inform future planning, resources, and supports for people with I/DD and their families.

Please complete the survey by Friday, August 14, 2026.

If you have questions about this survey, please contact:

Project Manager: Carol Napierski — cnapierski@nyalliance.org

Project Director: Seth Greenman — sgreenman1nyhrc@gmail.com
About the Survey Respondant

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1. How would you describe the role of the person taking the survey? (Required.)

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2. What is the approximate age of the person taking the survey? (Required.)

About the Person with an Intellectual or Developmental Disability (I/DD)
Please answer all questions from the perspective of the person with I/DD.

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3. What is your approximate age? (Required.)

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4. Race (Required.)

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5. Please choose the option that best describes where you currently live. (Required.)

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6. Do you identify as: (Required.)

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7. Please select the county where you live. (Required.)

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8. What is your primary language? (Required.)

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9. Do you receive services from the Office for People with Developmental Disabilities (OPWDD)? (Required.)

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10. Do you self-direct your services? (Required.)

Current Living Situation

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11. Please choose the option that best describes where you live now. (Required.)

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12. Please choose the option that best describes the level of staffing provided by the agency. (Required.)

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13. How many total people live in your home, including yourself? (If applicable, include any live-in caregiver(s) in the total) (Required.)

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14. Please choose the option that best describes the staff support you receive in your home. (Required.)

Your Plan for the Future

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15. Please choose the option that best describes your housing situation right now. (Required.)

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16. Please choose the option that best describes your plan for housing as you get older. (Required.)

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17. What types of support are in place to help you live where you choose? Select all that apply. (Required.)

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18. Who is in your circle of support? Select all that apply. (Required.)

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19. Please rate your level of confidence in your circle of support's ability to support you in these areas as you get older. (Required.)

  Not confident at all A little confident Somewhat confident Very confident Completely confident
Health care decision making
Financial decision making
Finding and keeping a home with the support I need
Staying connected with family and friends
Staying involved in community and social activities
Physical safety
Feeling happy, connected, and supported (well-being)

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20. How often does your circle of support talk about future housing plans? (Required.)

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21. How would you describe the strength of your circle of support? (Required.)

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22. How concerned are you about each of the following areas as you think about your future? Please select one answer for each item. (Required.)

  Not concerned A little concerned Somewhat concerned Very concerned
Health care decision making
Financial decision making
Finding and keeping a home with the support I need
Staying connected with family and friends
Staying involved in community and social activities
Physical safety
Feeling happy, connected, and supported (well-being)

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23. What is your biggest concern for your future? Do you have a plan for this concern? (Required.)

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24. Have you found ways to address any other concerns you had about the future? (Required.)

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25. What was the concern? (Required.)

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26. What was the solution? (Required.)

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27. What person/organization offered the solution? (Required.)

Solutions for the Future
Some people with I/DD do not have a parent or family member who helps them live in their own home.


Others get help from parents, family members, or other supporters. As family members get older, they may not be able to provide the same amount of support.


We would like to learn about ideas and supports that can help people continue living where they choose if family support is not available or changes in the future.

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28. Do you know of any ways families or organizations help people with I/DD to continue to live independently as they get older? (Required.)

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29. What is the solution? (Required.)

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30. Who provides this service, support, or solution? (Required.)

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31. What are the costs for this solution? (Required.)

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32. Please share why you are unsure. (Required.)

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33. Do you have any additional information you would like to share with the research team? (Required.)

OPTIONAL
If you would like to share the name and email address of the person completing the survey, please respond below. This is not required to submit your survey responses.

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34. First name

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35. Last name

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36. Email address

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