Supporting Children with Disabilities & Developmental Delays by All Children Thrive

Process

moshea12 — 2024-11-08 18:57:48 UTC

The process is long; had to wait 6 months

Invited to workshops

Advocate!

The following are themes that stood out to me from Talibah's story

2024-11-08 18:57:52 UTC

Parents provide the "blueprint" for the support they need for them and their child
This "blueprint" includes their hopes and individual values which are important to ensure that supports are individualized and aligned with their family.
Parents are experts.
It is important that we as the system are collaborators in helping them achieve their goals for their children and family.

Parent and provider connection are important

2024-11-08 18:57:53 UTC

advocacy for your children and having a support team

2024-11-08 18:58:41 UTC

Self reflection during the process

What happens when our kids turn 3?

2024-11-08 19:01:19 UTC

My son thankfully has a little over a year before he turns 3. He receives EI and I have a fear of him not getting the care he needs when he turns 3! I would love to see that be talked about next time.

Can we consider changing the name of the group to Children with Disabilities? "Special Needs" is not the preferred language.

2024-11-08 19:01:24 UTC

Flexibility

2024-11-09 23:25:19 UTC

Each of the themes highlighted are so important - I wanted to add that flexibility of services is important, too

Theme 1: Accessible and affordable services

erin674 — 2024-11-27 16:57:12 UTC

Theme 2: Communication and coordination for cohesive support

erin674 — 2024-11-27 16:57:47 UTC

Theme 3: Consistent and culturally responsive relationships

erin674 — 2024-11-27 16:57:57 UTC

Theme 3: Consistent and culturally responsive relationships

erin674 — 2024-11-30 01:03:53 UTC

Theme 1: Accessible and affordable services

erin674 — 2024-11-30 01:04:24 UTC

Theme 2: Communication and coordination for cohesive support

erin674 — 2024-11-30 01:04:49 UTC

All Themes: General Feedback

erin674 — 2024-11-30 01:11:26 UTC

All Themes: General Feedback

erin674 — 2024-11-30 01:13:37 UTC

Please add questions and comments here. Thanks!

erin674 — 2025-02-13 19:14:49 UTC

What additional voices do we need to engage? Please share your connections!

erin674 — 2025-05-27 00:05:24 UTC

What additional types/methods of engagement is needed to fill in the gaps?

erin674 — 2025-05-27 00:07:35 UTC

What could innovative service delivery appear/feel/look like for a parent and/or a provider? How can we learn more?

erin674 — 2025-05-27 00:09:59 UTC

Additional ideas to consider.

erin674 — 2025-05-27 00:13:09 UTC

What questions or comments do you have about the process?

erin674 — 2025-05-27 16:18:46 UTC

Summary of Current Challenges

erin674 — 2025-05-28 16:45:25 UTC

Summary of Future State

erin674 — 2025-05-28 16:48:36 UTC

This is a high-level summary of ideas for a future state? What else would you add?

Share upcoming opportunities to engage parents and caregivers in your networks.

erin674 — 2025-06-23 22:54:42 UTC

My Caregiving Experience Template Feedback

erin674 — 2025-06-23 23:12:55 UTC

A Common Day for My Child Template Feedback

erin674 — 2025-06-23 23:13:32 UTC

erin674 — 2025-07-22 14:16:39 UTC

What is your overall reaction to the draft portraits?

What other components or aspects of family experiences do you think should be added to the portraits to make them as realistic and valuable as possible?

erin674 — 2025-07-22 14:16:49 UTC

In what ways do you envision these portraits being used to guide decisions? What would make them more useful?

erin674 — 2025-07-22 14:17:22 UTC

How can this approach be strengthened for greater impact? How might families be included?

erin674 — 2025-07-22 14:18:08 UTC

Do the portraits feel respectful of families? If not, please point out where you have concerns.

erin674 — 2025-07-25 13:32:57 UTC

Do you have any creative thoughts on how the family portraits could or should be leveraged in the future?

erin674 — 2025-07-25 13:33:18 UTC

What type of data about the children in the Amin and Mitchell families is most needed that we don't currently have? If you are unsure about what data is currently used, tell us what data do you think is most important.

erin674 — 2025-08-18 15:35:00 UTC

How might having this data about the children with disabilities in the Amin and Mitchell families be helpful? Are there ways can it be harmful or lead to inequity?

erin674 — 2025-08-18 15:35:13 UTC

What new information or data collection approaches could help us best represent the children in the Amin and Mitchell families in the future?

erin674 — 2025-08-18 15:35:43 UTC

erin674 — 2025-11-17 22:14:02 UTC

1. What are similar or familiar themes that we have discussed?

erin674 — 2025-11-17 22:14:09 UTC

What is different?

erin674 — 2025-11-17 22:14:15 UTC

What do you want to make sure the ChiByDesign team knows as they move forward?

erin674 — 2025-12-16 17:05:48 UTC

Does this high-level list reflect priorities we've discussed? If not, what's missing?

erin674 — 2025-12-16 17:05:56 UTC

To access early childhood programs (Child Care (0-5), PreK, Home Visiting program, etc.) in your community, what types of transportation benefits or supports would be helpful?

erin674 — 2025-12-16 17:06:03 UTC

What types of materials would you need from an early childhood program (e.g., diapers, formula, books, etc.)?

erin674 — 2025-12-16 17:06:19 UTC

What types of navigation and outreach supports would you need from an early childhood program (e.g., interpreter and translated resources, accessible website, etc.)?

How did you find out about your child's early childhood program?

How would you like to access and navigate early childhood programs in the future (for you or future families)?

erin674 — 2025-12-16 17:06:26 UTC

If you had the opportunity to create an early childhood program in your community that meets the needs of your child, what are the start-up costs that you would like considered to support your child and family?

Do the recommendations so far reflect the priorities we’ve discussed?

erin674 — 2026-01-12 19:20:53 UTC

What resonates with you?

erin674 — 2026-01-12 19:20:59 UTC

What questions do you have?

erin674 — 2026-02-02 19:24:18 UTC

Are there considerations that should be a part of Phase 2 work with parents/caregivers?

erin674 — 2026-02-02 19:24:28 UTC

What is missing?

erin674 — 2026-02-02 19:24:39 UTC

What surprises you?

erin674 — 2026-02-02 19:24:46 UTC

What ideas resonate or are familiar?

erin674 — 2026-02-02 19:24:54 UTC

Principle 7: Provide compensation for parent/caregivers’ participation, feedback, and contribution to workstreams and beyond as available.

erin674 — 2026-03-09 17:19:02 UTC

Principle 6: Design programs and cultivate community partnerships that are informed by the needs of children and families.

erin674 — 2026-03-09 17:19:07 UTC

Principle 5: Implement equitable strategies for continuous quality improvement to center parent/caregiver voice and improve feedback loops.

erin674 — 2026-03-09 17:19:14 UTC

Principle 4: Resources and communication modalities are family friendly, use strength-based language, and are accessible in multiple languages to engage families across Illinois.

erin674 — 2026-03-09 17:19:20 UTC

Principle 3: Embed parent/caregivers into programmatic leadership and governance processes to ensure they are at decision making tables.

erin674 — 2026-03-09 17:19:25 UTC

Principle 2: Staff and facilitators are trained in equity and cultural competency principles to engage with parent/caregivers across Illinois to build stronger relationships and establish mutual trust.

erin674 — 2026-03-09 17:19:35 UTC

Principle 1: Center parent/caregiver voices by respecting and honoring their lived experience and expertise in early childhood.

erin674 — 2026-03-09 17:19:40 UTC

What resonates or is missing when you look at the proposed vision?

erin674 — 2026-04-14 14:57:07 UTC

What needs to change for you to feel good about the draft vision?

erin674 — 2026-04-14 14:57:21 UTC

What resonates or is missing when you look at the proposed guiding principles?

erin674 — 2026-04-14 14:57:35 UTC

What needs to change for you to feel good about the draft guiding principles?

erin674 — 2026-04-14 14:57:51 UTC

Are the Draft Family Engagement Statewide Survey questions useful for capturing the experiences of children with disabilities and developmental delays and their families?

erin674 — 2026-05-12 14:07:49 UTC

What resonates or is missing from the current survey questions?

erin674 — 2026-05-12 14:07:58 UTC

Are there questions you would ask to create a data narrative that supports children with disabilities and developmental delays and their families?

erin674 — 2026-05-12 14:08:04 UTC

How would you describe your experiences with requests to provide data/information or interpret data?

erin674 — 2026-05-12 14:08:11 UTC

How should questions be designed to make sure data collection and use is equitable, inclusive, and centers children with disabilities and developmental delays and families?

erin674 — 2026-05-12 14:08:17 UTC

What structures are needed to strengthen feedback loops on how data is being used for supporting children with disabilities and developmental delays and their families?

erin674 — 2026-05-12 14:08:21 UTC

How should IDEC ask parents about their child’s school schedule, so we know what hours of care the family needs on the Subsidy Parent Application?

erin674 — 2026-05-12 14:08:27 UTC

What parts of the Transition are most clear to you right now?

erin674 — 2026-06-09 14:09:10 UTC

How are you feeling about the upcoming Transition?

erin674 — 2026-06-09 14:09:14 UTC

What could IDEC do to help reduce confusion or stress during this Transition for families?

erin674 — 2026-06-09 14:09:28 UTC

What support or information do families need from IDEC?

erin674 — 2026-06-09 14:09:32 UTC

Who would you suggest as their single point of entry for seeking resources and services?

erin674 — 2026-06-09 16:58:48 UTC

What information (e.g., website, resources) would you share to help them with the Early Intervention process?

erin674 — 2026-06-09 16:59:02 UTC

What community supports and/or organizations would you share with your friend?

erin674 — 2026-06-09 16:59:15 UTC

erin674 — 2026-07-07 14:48:37 UTC

What recommendations should we add to the Ease of Navigation and Administrative Burden section of the TAC Report Outline to advance this work?

erin674 — 2026-07-07 14:48:41 UTC

Are there any lingering questions for the Ease of Navigation and Administrative Burden recommendations?

erin674 — 2026-07-07 14:48:46 UTC

What resonated with you in the Ease of Navigation and Administrative Burden recommendations?

erin674 — 2026-07-07 14:48:58 UTC

What recommendations should we add to the Advisory section of the TAC Report Outline to advance this work?

erin674 — 2026-07-07 14:49:02 UTC

Are there any lingering questions for the Advisory recommendations?

erin674 — 2026-07-07 14:49:07 UTC

What resonated with you in the Advisory recommendations?

Supporting Children with Disabilities & Developmental Delays by All Children Thrive

Process

The following are themes that stood out to me from Talibah's story

Parent and provider connection are important

What happens when our kids turn 3?

Can we consider changing the name of the group to Children with Disabilities? "Special Needs" is not the preferred language.

Flexibility

Theme 1: Accessible and affordable services

Theme 2: Communication and coordination for cohesive support

Theme 3: Consistent and culturally responsive relationships

Theme 3: Consistent and culturally responsive relationships

Theme 1: Accessible and affordable services

Theme 2: Communication and coordination for cohesive support

All Themes: General Feedback

All Themes: General Feedback

Please add questions and comments here. Thanks!

What additional voices do we need to engage? Please share your connections!

What additional types/methods of engagement is needed to fill in the gaps?

What could innovative service delivery appear/feel/look like for a parent and/or a provider? How can we learn more?

Additional ideas to consider.

What questions or comments do you have about the process?

Summary of Current Challenges

Summary of Future State

Share upcoming opportunities to engage parents and caregivers in your networks.

My Caregiving Experience Template Feedback

A Common Day for My Child Template Feedback

What other components or aspects of family experiences do you think should be added to the portraits to make them as realistic and valuable as possible?

In what ways do you envision these portraits being used to guide decisions? What would make them more useful?

How can this approach be strengthened for greater impact? How might families be included?

Do the portraits feel respectful of families? If not, please point out where you have concerns.

Do you have any creative thoughts on how the family portraits could or should be leveraged in the future?

What type of data about the children in the Amin and Mitchell families is most needed that we don't currently have? If you are unsure about what data is currently used, tell us what data do you think is most important.

How might having this data about the children with disabilities in the Amin and Mitchell families be helpful? Are there ways can it be harmful or lead to inequity?

What new information or data collection approaches could help us best represent the children in the Amin and Mitchell families in the future?

Do the recommendations so far reflect the priorities we’ve discussed?

What resonates with you?

What questions do you have?

Are there considerations that should be a part of Phase 2 work with parents/caregivers?

What is missing?

What surprises you?

What ideas resonate or are familiar?

Principle 7: Provide compensation for parent/caregivers’ participation, feedback, and contribution to workstreams and beyond as available.

Principle 6: Design programs and cultivate community partnerships that are informed by the needs of children and families.

Principle 5: Implement equitable strategies for continuous quality improvement to center parent/caregiver voice and improve feedback loops.

Principle 4: Resources and communication modalities are family friendly, use strength-based language, and are accessible in multiple languages to engage families across Illinois.

Principle 3: Embed parent/caregivers into programmatic leadership and governance processes to ensure they are at decision making tables.

Principle 2: Staff and facilitators are trained in equity and cultural competency principles to engage with parent/caregivers across Illinois to build stronger relationships and establish mutual trust. ​

Principle 1: Center parent/caregiver voices by respecting and honoring their lived experience and expertise in early childhood. ​

What resonates or is missing when you look at the proposed vision?

What needs to change for you to feel good about the draft vision?

What resonates or is missing when you look at the proposed guiding principles?

What needs to change for you to feel good about the draft guiding principles?

Are the Draft Family Engagement Statewide Survey questions useful for capturing the experiences of children with disabilities and developmental delays and their families?

What resonates or is missing from the current survey questions?

Are there questions you would ask to create a data narrative that supports children with disabilities and developmental delays and their families?

How would you describe your experiences with requests to provide data/information or interpret data?

How should questions be designed to make sure data collection and use is equitable, inclusive, and centers children with disabilities and developmental delays and families?

What structures are needed to strengthen feedback loops on how data is being used for supporting children with disabilities and developmental delays and their families?

How should IDEC ask parents about their child’s school schedule, so we know what hours of care the family needs on the Subsidy Parent Application?

What parts of the Transition are most clear to you right now?

How are you feeling about the upcoming Transition?

What could IDEC do to help reduce confusion or stress during this Transition for families?

What support or information do families need from IDEC?

Who would you suggest as their single point of entry for seeking resources and services?

What information (e.g., website, resources) would you share to help them with the Early Intervention process?

What community supports and/or organizations would you share with your friend?

Principle 2: Staff and facilitators are trained in equity and cultural competency principles to engage with parent/caregivers across Illinois to build stronger relationships and establish mutual trust.

Principle 1: Center parent/caregiver voices by respecting and honoring their lived experience and expertise in early childhood.