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Using “Learn the Signs. Act Early” Resources with Families and Community Partners!

Deana McGuire Buck, M.Ed.

CDC’s Act Early Ambassador in Virginia

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CDC’s Milestone Checklists

www.cdc.gov/ActEarly/Materials

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Since 2005, CDC’s Learn the Signs. Act Early. program has provided FREE resources for families, healthcare providers and early childhood professionals like early childhood educators, WIC providers, home visitors and more to support early identification of children with developmental delays and disabilities.

The checklists were developed as a family-friendly adaptation of 2 publications by the American Academy of Pediatrics to help support developmental surveillance and screening.

Checklists come in multiple formats

Printable PDFs for distribution to support developmental surveillance during health supervision visits 2 month- 5 years of age

Online digital version of checklists for families to complete and share by printing or email to your practice.

Milestone Tracker app- with all the checklists so parents can track a child’s milestones electronically and show you a brief summary at health supervision visits during developmental surveillance discussions

Milestone Moments Booklet –with all the checklists, for families that prefer paper formats over electronic and can share, like the app, an ongoing record of the child’s developmental progress

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Milestones Tracker App

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Quick Check!

Have you ever seen the “Learn the Signs. Act Early” resources?
Have you shared them with families?

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Developmental�Monitoring

Done by parents, teachers,�health professionals��Ongoing process-begins �at birth��Sample tool: �“Learn the Signs. Act Early.” �Milestone Checklists

Formal process��Recommended by the �American Academy of �Pediatrics at 9, 18, �and 24 or 30 months ��Done by health professionals� and may be done by �teachers with special training��Uses a validated screening tool��Sample tool: �Ages and Stages Questionnaire

Both:

Look for developmental milestones

Important for tracking signs of development and identifying concerns

Developmental Screening

Developmental monitoring + screening = more kids in early intervention compared with DS or DM alone! (Barger et al., 2018)

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So many milestones to celebrate!

Tracking milestones helps every parent support their child’s development

Begins to smile at people!

Tries to look at parent!

Looks for things she sees you hide!

Puts things in mouth!

Throws a ball!

Begins to sort shapes and colors!

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Milestone Checklists and �Milestone Tracker app

Digital Checklists, too!

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You May Have Heard…

CDC milestone checklists:

Are communication tools for developmental monitoring
Not screening tools
Do not replace screening
Not standards or CDC guidance

Revisions were completed in 2019

publication of the process and results in Feb. 2022

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You may have heard that CDC’s Learn the Signs. Act Early. program recently revised its developmental milestones for use in developmental monitoring/surveillance

Before I discuss the revisions and the process for revisions, I want to clarify the misconception that CDC lowered the standards of early childhood development. The changes made to the LTSAE milestone checklists do not reflect any observed change in developmental trajectories of children in the population. CDC did not lower any standards for early childhood development or propose any changes to how children are evaluated for developmental delays and disabilities. The updates reflect the use of a different method for identifying which milestones to include at certain ages on the LTSAE milestone checklists to improve identification of potential developmental concerns.

I appreciate the time to discuss what the revisions, the revision process, and the strengths and limitation of these developmental monitoring tools. As many of you know the new milestones and materials were released in February 2022 in conjunction with the peer-reviewed article “Evidence-Informed Milestones for Developmental Surveillance Tools” detailing the revision process in the journal Pediatrics. Although the revisions were completed in 2019, the program wanted to wait until the process for revisions was published, so early childhood professionals could better understand the revisions, why they were made, and what the strengths and limitations of the milestone checklists are for developmental surveillance/monitoring.

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Why revise?

Incorporate feedback from over 15 years of use

Where are 15- and 30-month checklists?
Vague (“may”, “begins”)
“How many milestones can be missing without being concerned?”
Are only the “warning signs” important?
Are these milestones MOST children do by this age?

For more than 15 years, the Learn the signs. Act Early. program has received feedback from people who use the materials including parents, LTSAE ambassadors, physicians, early childhood educators, home visitors, WIC providers and more. Formal feedback was obtained through parent testing and parent and early childhood provider surveys. Informal feedback was shared through comments from partners.

This feedback identified the need for

-15 and 30mo. checklists to have a checklist for each recommended health supervision visits (well child check-ups) from 2mo-5yrs of age.

-Improving clarity for families and providers by

eliminating duplication of milestones across checklists,

removing vague language such as “may” or “begins,” and

incorporating “warning signs” within the milestones and eliminating a separate list of warning signs, which were mainly milestones from earlier ages listed separately with an “act early message” encouraging families to discuss with their child’s doctor

In addition, LTSAE wanted to make sure the materials supported conversations with families and early childhood providers that did not create unnecessary worry for families and prevented a “wait and see” approach when families mention concerns.

In order to do that LTSAE wanted to:

-Ensure the milestones are ones MOST children would be expected to do by the checklist age and define what MOST means.

-Clarify that any developmental concerns and/or missed milestones warrants performing validated developmental screening to determine if a child is “at risk” for developmental delays. (Keep in mind, Screening may be bypassed, and the child directly referred for further evaluation by early intervention programs and specialists if the child has obvious delays)

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Why “Most” (≥ 75%)?

Traditionally, milestone lists use 50^th percentile or average age milestones

Half of children not expected to exhibit the milestone yet

What if a child is missing 50^th percentile milestones?

May cause unnecessary parental concern
May result in “wait and see” approach by professionals

So, why Most?

Traditionally lists of milestones used for education/training of Early childhood professionals and then later adapted for use with families represented 50^th percentile OR average age milestones.

Average or median ages of achievement can be useful for training of early childhood providers and general recognition of the progression of child development. However, it doesn’t necessarily help knowing if there is a concern with an individual child, since only half of children would be expected to achieve a milestone by the given age. Should the parent or professional really be concerned? Early childhood professionals, including healthcare providers, might appropriately take a “wait and see” approach or discuss how “children all develop at their own rate” to reassure a parent using milestones that represent average or 50^th percentile.

Since the CDC milestones were originally adapted from a parenting book to fit health supervision visit ages (well child check-ups), it was unknown if the milestones were ones most (75% or more) would be expected to achieve by that age checklist.

So, the LTSAE and developmental experts wanted to ensure the milestones were ones MOST children would be expected to achieve to support decision making to then use validated developmental screening to assess a child’s risk for delays. Validated developmental screening is designed to provide a risk categorization, whereas developmental surveillance is not.

Why didn’t the experts pick a higher goal like 85-90% of children achieving the milestones? Because the goal of surveillance is not to replace screening, which uses these higher percentile cut offs and other considerations to determine risk categorization for developmental delays.

Using milestones 75% or more would be expected to achieve was felt to not unnecessarily worry parents while at the same time provide children who may be at risk for developmental delays the opportunity for additional developmental screening.

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Why “Most” (≥ 75%)?

≥ 75^th percentile milestones may better support validated screening as next step for children missing milestones.

So, why Most?

Traditionally lists of milestones used for education/training of Early childhood professionals and then later adapted for use with families represented 50^th percentile OR average age milestones.

Average or median ages of achievement can be useful for training of early childhood providers and general recognition of the progression of child development. However, it doesn’t necessarily help knowing if there is a concern with an individual child, since only half of children would be expected to achieve a milestone by the given age. Should the parent or professional really be concerned? Early childhood professionals, including healthcare providers, might appropriately take a “wait and see” approach or discuss how “children all develop at their own rate” to reassure a parent using milestones that represent average or 50^th percentile.

Since the CDC milestones were originally adapted from a parenting book to fit health supervision visit ages (well child check-ups), it was unknown if the milestones were ones most (75% or more) would be expected to achieve by that age checklist.

So, the LTSAE and developmental experts wanted to ensure the milestones were ones MOST children would be expected to achieve to support decision making to then use validated developmental screening to assess a child’s risk for delays. Validated developmental screening is designed to provide a risk categorization, whereas developmental surveillance is not.

Why didn’t the experts pick a higher goal like 85-90% of children achieving the milestones? Because the goal of surveillance is not to replace screening, which uses these higher percentile cut offs and other considerations to determine risk categorization for developmental delays.

Using milestones 75% or more would be expected to achieve was felt to not unnecessarily worry parents while at the same time provide children who may be at risk for developmental delays the opportunity for additional developmental screening.

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“Red Flag” Milestones

“Look for ” Milestones

“Red Flag” Milestones Only

Old Checklist- 26 total milestones

New Checklist- 13 total milestones

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Pediatrics

More information about the revision process can be found in the article “Evidence-Informed Milestones for Developmental Surveillance Tools”

https://publications.aap.org/pediatrics/article/149/3/e2021052138/184748/Evidence-Informed-Milestones-for-Developmental

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Additional Checklist Features

Open-ended questions (new)
Act early messaging
Early intervention information
Tips and activities for developmental promotion and early relational health (revised/expanded)

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Additional Checklist Features

https://www.cdc.gov/ncbddd/actearly/pdf/checklists/Eng.-18-mo-Milestone-Moments-Checklist-2021-P.pdf

Look at the “Help your child learn and grow” ideas!

Look at the open-ended questions!

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Strengths

Improve clarity
Improve sharing concerns
Improve sharing concerns when there is no corresponding milestone
Decrease “Wait and See”/ support trusting relationships
Support screening as a next step
Additional tips/activities for developmental promotion

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Additional Resources

Help Me Grow

VEIPD: Child Development, the videos, then https://www.veipd.org/main/sub_child_dev.html

Zero to Three

Revised Developmental Milestones for Babies and Toddlers: Your Questions Answered

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“The earlier developmental delays are detected and intervention begins, the greater the chance a young child has of achieving his or her best potential.” Georgia pediatrician

Intervention is likely to be more effective when it is provided earlier in life rather than later.³

³ ECTA Center, 2011

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Small Group Activity

https://www.cdc.gov/ncbddd/actearly/pdf/booklets/Milestone-Moments-Booklet21_Eng_Sng_FNL-508.pdf

Milestone Moments booklet

https://www.cdc.gov/ncbddd/actearly/milestones-app.html

Milestone Tracker app

https://www.cdc.gov/ncbddd/actearly/freematerials.html#Children

Children's Books

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Small Group Activity

How could this be shared with families?
How could it be useful to families?

Milestone Moments booklet

How could this be shared with families?
How could it be useful to families?

Milestone Tracker app

How could this be shared with families?
How could it be useful to families?

Children's Books

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Resilience and Support

New Path

https://www.thearcofva-newpath.com/

Robin Church rchurch@thearcofva.org

(804) 649-8481 x102

PEATC (Parent Education and Advocacy Training Center)

https://peatc.org/services/early-childhood/

Center for Family Involvement

HELPLINE: (877) 567-1122

cfihelpline@vcu.edu

Overview video: https://vimeo.com/700930078

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�Think of resilience as a seesaw or balanced scale�

(Center on the Developing Child, 2021)

What can we do to build up more strength and positive resilience?

What is resilience? Think of resilience as a seesaw or balanced scale, where negative experiences tip the scale toward bad outcomes, and positive experiences tip it toward good outcomes

�What can we do to balance – build up more strength on build positive resilience?

One way is to Unload the Negative Side - reducing sources of stress for families:

Helping families meet basic needs like food, shelter, diapers, health care, child care, and internet access or connecting them with programs that can help
Guiding parents/family members who are out of work through applying for financial assistance
Creating and providing children’s activity kits that include things like coloring books, crayons and markers, word searches, puzzles, books, craft supplies, etc. to give parents and caregivers a break, even for a few minutes at a time
Encouraging parents to practice self-care—even if it’s just taking a few minutes to themselves, going for a walk, or getting plenty of rest.

I’m going to talk about the other side – how we overload the positive side in more detail in a minute

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Within a person’s family (as they uniquely define and experience it), family resiliency means applying family strengths and resources in a way consistent with their beliefs so that they think about life changes and transitions more positively, feel more hopeful and confident that they can manage it, and respond or adapt to challenges together.

Defining Family Resilience

Center for Family Involvement (2021)

Intentional matching of a parent with a newly diagnosed child with disabilities with a ‘seasoned’, trained parent for emotional, informational, and systems navigational support

The parent to parent work is what I have focused on for the last 25 years, including being one of the co-founders of P2PUSA.

The Parent to Parent model is used by the Center for Family Involvement. Our work includes support to diverse parents and family members of children and adults with disabilities. We believe parent to parent support is a resiliency intervention – so now we are studying it

This definition on the screen was developed with some of the CFI team who represent Arabic, Latinx African American and Asian cultures. We met for several months to define ‘resiliency’ and to understand the family resiliency model by Froma Walsh. We needed to make sure that the concept of resilience was understandable across all cultures. This is the final definition we developed for our work. Are there words in this definition that stand out to you? For me, it is hope and that each person defines their family – we don’t define their family – they do.

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Resilient Families

“Healthy development depends on the quality and reliability of a child’s relationships with the important people in his or her life, both within and outside the family.”

(National Scientific Council on the Developing Child. (2009)

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The Partnership’s

Family Support Framework

Supported & Resilient Families

Following the model of resilience training are other ways to balance the scale or tip it more towards positive resilience through family support. We conducted an analysis of all the family research the Partnership and Center for Family Involvement had conducted since 2015. The result is that Virginia families of people with disabilities are strong and diverse. They draw on numerous resources in order to seek happy and healthy lives for all members of the family, as depicted in this graphic. Families know what types of support they need. They work hard to meet those needs by leveraging their own family resources such as time, finances, etc., and often find that building relationships with other families, professionals, and neighbors is one of the most important forms of support. In fact, family-to-family relationships are a form of social capital that can help families of people with disabilities navigate complex systems, gain emotional support, and share ideas. Family-to-family ties can be particularly strong when cultural capital is involved, so that families can share information that is grounded in common language and culturally-bound understandings of disability and family roles. Though families are resourceful in getting many of their needs met through their own efforts, many families also rely on quality supports from the publicly-funded service system. In order for families to find out about services, and how best to use those services, they often ask that information be presented to them in ways that meet their needs. Timely communication in clear and accessible language is highly valued by families of people with disabilities. When family resourcefulness and quality service systems interact, it can result in supported families of people with disabilities.

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Deana McGuire Buck, CDC’s Act Early Ambassador to Virginia

deanabuck@gmail.com

(804) 405-9064

Acknowledgment

The Act Early Ambassador Program is a collaborative effort of the Centers for Disease Control and Prevention (CDC), Health Resources and Services Administration (HRSA) and Association of University Centers on Disabilities (AUCD) to advance CDC’s “Learn the Signs. Act Early.” program to improve early identification of developmental disabilities. The project is funded by CDC.�

Disclaimer

The findings and conclusions in this presentation are those of the authors and do not represent �the official position of the Centers for Disease Control and Prevention or the Health Resources and �Services Administration.

www.cdc.gov/ActEarly