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Hidden Gap Caregiver Survey - Melanin Children Matter Inc.

Help Us Find the Hidden Gap

What was noticed? What was documented? What happened next?

Thank you for sharing your family’s experience.

Families often notice developmental, communication, learning, behavioral, sensory, or health differences before those concerns are formally recognized. Melanin Children Matter Inc. is developing the Hidden Gap Project to better understand what happens between what families notice and what schools, childcare providers, healthcare professionals, and other systems recognize and document.

This survey asks about your child’s path to answers and support, including how documentation may have helped—or created barriers—along the way.

MCM serves families from all backgrounds while intentionally working to hear from families whose experiences are often overlooked or underrepresented, including families of color and families of any race living in rural or medically underserved communities.

The survey takes approximately 10–12 minutes. Your responses are anonymous. Participation is voluntary, and you may skip any question you prefer not to answer.

After completing the survey, you will have the option to enter a separate drawing for one of two $125 Visa Gift Card. Contact information submitted for the drawing will not be connected to your anonymous survey responses.

Please answer about one child. If you have more than one child with developmental, neurodivergent, neurological, rare, or related needs, choose the child whose experience you would most like to share.

SECTION 1 — ABOUT YOUR CHILD & FAMILY

1. What is your relationship to the child you are answering about?

A
B
C
D
E
F
G
H

2. What is your child’s current age?

A
B
C
D
E
F
G
H

3. How does your child identify by race and/or ethnicity?

4. Which best describes the community where your family lives?

A
B
C
D
E
F
G

5. What state or U.S. territory does your family currently live in?

6. Has your child received a formal diagnosis related to neurodivergence, developmental differences, or a rare/neurological condition?

A
B
C
D
E
F
G

7. If your child has received a diagnosis, what is the main diagnosis or diagnoses?

8. Is a rare, genetic, neurological, or medically complex condition part of your child’s experience?

A
B
C
D

9. Does your child currently have, or have they previously had, any of the following?

Select all that apply.

SECTION 2 — YOUR TIMELINE

10. How old was your child when developmental, learning, behavioral, sensory, communication, or health-related concerns were first noticed?

A
B
C
D
E
F
G
H

11. Who first noticed differences or concerns?

Select all that apply.

12. When concerns were first raised, how did professionals respond?

Select all that apply.

13. About how long was it from the first concern to an evaluation or diagnosis that provided useful answers?

A
B
C
D
E
F
G
H

14. How many professionals or evaluators did your family see before getting useful answers?

A
B
C
D
E
F

SECTION 3 — THE DOCUMENTATION GAP

15. Before diagnosis or formal recognition of your child’s needs, were concerns documented in school, daycare, therapy, or medical records?

A
B
C
D
E
F

16. How were your child’s early differences or concerns usually described by professionals?

Select all that apply.

17. Do you believe earlier or better documentation could have helped your child receive appropriate evaluation, diagnosis, services, or support sooner?

A
B
C
D
E

18. In your experience, did any of the following affect how your child’s concerns were interpreted, documented, or acted on?

Select all that apply.

19. Before your child received appropriate answers or support, how much do you agree with the following?

1 = Strongly disagree | 5 = Strongly agree

1
5
Professionals took my concerns seriously.
My knowledge of my child was valued.
What I shared about my child was accurately documented.
My child’s strengths were recognized.
My family’s background and circumstances were respected.
I understood what the next steps were.
I trusted the process.

20. Which barriers did your family experience while trying to get answers or support?

Select all that apply.

21. (Optional) Tell us about a time when something important about your child was missed, minimized, not documented, or documented in a way that affected what happened next.

SECTION 4 — GETTING ANSWERS

22. Who first initiated or recommended an evaluation that helped move your child toward answers?

A
B
C
D
E
F
G
H
I

23. Did the professionals evaluating or supporting your child listen to what you knew about your child?

A
B
C
D
E
F

24. Were your child’s strengths included alongside their challenges or support needs?

A
B
C
D
E

SECTION 5 — SCHOOL SUPPORT & ONGOING DOCUMENTATION

25. How individualized does your child’s current or most recent school support plan feel?

A
B
C
D

26. How much do you agree with the following statements about your child’s school documentation or support plan?

1 = Strongly disagree | 5 = Strongly agree

1
5
It reflects my child’s strengths as well as support needs.
It uses specific, objective language rather than labels.
It includes meaningful caregiver input.
It gives specific, actionable goals or next steps.
It is updated when my child’s needs change.
It reflects strategies or supports that actually work for my child.

27. How well are the following areas documented in your child’s school records or support plan?

Well
Partly
Not at all
Not applicable
Communication
Learning
Sensory needs
Emotional regulation
Attention / executive functioning
Motor or physical needs
Social interaction
Strengths and interests
Health / medical needs
Family or caregiver observations
Cultural or language context

28. Which note would provide more useful information for understanding and supporting the child?

Example 1
A: “Refuses to follow directions and disrupts class.”
B: “Has difficulty following multi-step directions and transitions; responds better when given visual cues and a two-minute warning.”

A
B
C

Example 2
A: “Student is defiant and avoids work.”
B: “Avoids written tasks when demands increase; completes more work when offered a choice of format and a short movement break.”

A
B
C

29. Overall, how helpful has ongoing documentation been in getting your child appropriate support?

A
B
C
D
E
F

30. Have you ever had to advocate for inaccurate, incomplete, or unhelpful language in your child’s records to be changed?

A
B
C
D

31. Has documentation helped or created barriers in any of the following areas?

Helped
Created barriers
Both
No effect / Not applicable
Evaluation or referral
Services or therapies
IEP / 504 / accommodations
Classroom placement
Discipline
Social inclusion
Medical or specialist care
Access to benefits or resources

32. (Optional) What would “good” ongoing documentation look like for your child?

Think about what should be written, how concerns and strengths should be described, how often records should be updated, and how documentation should lead to action.

SECTION 6 — IMPACT ON YOUR FAMILY

33. How much time, stress, or effort has advocating for answers, accurate records, services, or support added to your family’s life?

A
B
C
D
E

34. Since you began seeking answers or support for your child, how has your trust in schools, healthcare systems, or other professionals changed?

A
B
C
D
E

SECTION 7 — BUILDING BETTER DOCUMENTATION & SUPPORT

35. Which documentation practices do you think would help families most?

Select all that apply.

36. Which formats would be most useful for helping educators, childcare providers, clinicians, and other professionals improve early recognition and documentation?

Select all that apply.

37. (Optional) What specific change in how teachers, childcare providers, clinicians, or other professionals document children’s needs would make the biggest positive difference for families?

For example: what should be documented earlier, what language should or shouldn’t be used, how caregiver observations should be included, how strengths and context should be recorded, or how documentation should lead to evaluation, referrals, services, or other support.

38. (Optional) Is there anything else you want Melanin Children Matter to understand about your family’s experience that we did not ask?