Special Needs Caregiver Survey
Section 1: Finding Resources
2. Rank the most challenging resource areas from most to least difficult:
How do you usually find new resources?
Rank from most common to least Common
*4. If a program to navigate the resources and processes was available through your employer at no cost to you, would you utilize the service?
*5. Have you been able to access all the therapies/services your child needs?
Rank what would help you access more resources from most to least helpful
Section 2: Navigating Government Benefits
*7. Do you currently receive government benefits for your child?
9. Rank the biggest barriers to receiving government benefits from most to least challenging:
*10. Have you received help navigating government benefits?
11. Rank the most beneficial government benefits you’ve received (or would like to receive) from most to least important
Section 3: Understanding Next Steps
13. Rank your biggest concerns for your child’s future from most to least concerning
*14. Have you found professionals to guide you in planning your child’s future?
15. Rank the topics you need the most guidance on from most to least important
Section 4: Family Hardships
*19. Does the primary wage earner in the family ever need to miss work or change work plans due to caregiving responsibilities?
*21. How often do you access respite care or support?
22. Rank the support types that would most help reduce stress from most to least helpful
Section 5: Planning for the Future
*24. Have you started planning for your child’s long-term needs?
*25. Are you aware of financial tools like special needs trusts or ABLE accounts?
26. Rank your biggest concerns for your child’s transition to adulthood from most to least important
27. Rank the support that would help you most in future planning from most to least helpful
28. If you could receive one major piece of help today, what would it be?
Please Rank in order of what’s most important to least.
Section 6: Going on Camera
29. Would you be willing to be interviewed on camera for a social media campaign that will highlight the moments of living with special needs.
Some of the questions will include:
What do you wish most people knew about your loved one?
What has brought you and your loved one the most joy?
What has been the greatest struggle?
What do you wish for their future?
What do they hope for their future?
*This would be a 5 min interview.
30. Would your loved one be willing to be interviewed on camera for a social media campaign that will highlight the moments of living with special needs.
Some of the questions will include:
What do you wish most people knew about you?
What do you love to do?
What is your favorite thing?
What would help you be your best?
What do you want to be?
*This would be a 5 min interview.
