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OT Notes on CDC Developmental Milestones Update and Learn the Signs Act Early

Overview of Episode and Key Guests

  • Podcast: Everyday Evidence by the American Occupational Therapy Association (AOTA).
  • Host: Matt Brandenburg.
  • Guests: Dr. Kate Barlow (Associate Professor, American International College, Springfield, MA) and Dr. Kris Barnekow (Associate Professor and Post Professional Doctor of Occupational Therapy; Implementation Chair, University of Wisconsin–Milwaukee).
  • Both guests are ambassadors for CDC’s Learn the Signs Act Early program.
  • Topic focus: Updated CDC developmental surveillance milestone checklists, the related research with the American Academy of Pediatrics (AAP), and the AOTA question-and-answer resource document.
  • Acknowledgement: Social media activity around this topic; listeners encouraged to review related articles/resources in addition to the interview.

Learn the Signs Act Early (LSAE) Ambassadors: Purpose and What It Means to Be an Ambassador

  • Ambassadors expand the reach of Learn the Signs Act Early to improve early identification of developmental delays and disabilities (including autism).
  • Since 2011, professionals with medical, child development, disability, special education, and early intervention expertise have served as state/territorial points of contact for LSAE.
  • Roles include supporting state teams and other initiatives, and promoting adoption/integration of LSAE resources into systems serving young children and families.
  • Ambassadors serve a term of 2 ext{ years}.
  • Ambassadors’ announcements are posted when terms begin; Massachusetts’ ambassador position was posted in 2018, Kate Barlow began in 2019, and more positions were posted in the summer (as of the interview).
  • How to apply/learn more: Google “learn the signs act early,” then click on the Ambassadors section for information and application details.

Ambassador Experience: Motivations and Examples

  • Kris Barnekow (early intervention background; autism diagnostic team; former EI service provider director):
    • Observed referrals to birth-to-three often shortly before age 3 or not at all, due to parental concerns not being addressed.
    • Conducted research to identify barriers to developmental screening and autism-specific screening, uncovering structural (e.g., payment gaps) and knowledge barriers (e.g., lack of knowledge about developmental monitoring, screening tools, and communicating with diverse families).
    • Shifting from individual service provision to a public health approach emphasizing health, communication, and family engagement.
    • Motivation for CDC ambassador work tied to reducing barriers and improving early identification through public health strategies.
  • Kate Barlow (OT, long-term interest in public health and WHO):
    • Sees ambassador work as a public health pivot; expanded role includes grant work in Head Start; working in community settings beyond EI.
    • Values family engagement and broader impact on systems and policies.
    • Describes her ambassador work as steering her career toward population health and public health-informed practice.

CDC Developmental Surveillance Milestone Checklists: Purpose and Use

  • The Learn the Signs Act Early (LSAE) program provides multiple free developmental monitoring tools.
  • The checklists are developmental monitoring tools, designed as communication tools regarding child development.
  • Purpose:
    • Educate and engage families, early education and care providers, physicians, and other professionals about skills most children (≥ 75^{ ext{th}} percentile) would be expected to show by specific ages.
    • Support and augment, but do not replace, universal developmental screening conducted at well-child visits per American Academy of Pediatrics (AAP) recommendations.
  • The aim is to increase screening conducted between the normal well-child visits, not to replace scheduled screenings.
  • The checklists are intended to be used in conjunction with universal screening to improve the likelihood of identifying children with developmental concerns early.

Developmental Terminology: Surveillance, Monitoring, Screening, and Evaluation

  • Developmental surveillance (at every pediatric visit):
    • Six steps: (1) review the developmental monitoring checklist and history; (2) ask about concerns; (3) assess strengths and risks; (4) observe the child; (5) document; (6) share results with others.
    • A broad, ongoing process to identify concerns over time.
  • Developmental monitoring:
    • Broader public-health activity that can be conducted by anyone in the community (not limited to clinicians).
    • Aimed at increasing awareness and prompting conversations about development.
    • Should be paired with screening for best practice.
  • Developmental screening:
    • A brief, validated tool used by clinicians to identify potential developmental delays.
    • Is brief (often ~15 minutes) and not diagnostic; follow-up with a comprehensive evaluation is required if concerns arise.
  • Comprehensive evaluation:
    • The formal, diagnostic process to confirm or disconfirm concerns raised by screening.
  • How the checklist fits in: Provides a means to prompt conversations and identify potential concerns between routine screenings, facilitating timely referrals for screening or evaluation.

Purpose and Process of the 2022 CDC Milestone Update

  • The CDC updated the milestones to improve specificity and usefulness for parents and clinicians.
  • Timeline and rationale:
    • Literature review and data analysis initiated around 2019, culminating in revisions.
    • A 2019 Pediatrics paper titled Establishing New Norms for Developmental Milestones highlighted the need for milestones to include more specific parent-facing questions and to indicate when to act early.
    • Parent testing for understanding/reliability conducted in Summer 2020 with diverse populations.
  • Core methodological approach (described in Zubler et al., 2023):
    • Convened subject-matter experts across child development fields.
    • Conducted a literature review in March 2019 using Medline, PsycInfo, ERIC.
    • Nominated and reviewed developmental resources and commonly used screening/diagnostic tools.
    • Evaluated current milestones and performed milestone evaluation of collected resources.
    • Included only milestones with unanimous approval from experts.
  • Key criteria for including milestones:
    • Milestones chosen to reflect what most children ( ext{≥ } 75^{ ext{th}} percentile) would be expected to do by a specific age, based on available data.
    • Data availability determined inclusion; not all previous milestones had sufficient data.
    • Some milestones kept with same age as previously described; some shifted by data availability or new evidence.
  • Notable addition: New milestones at 15 ext{ months} and 30 ext{ months} were added; previously there were 4- and 5-visit time-points, now coverage includes these added check-ins between well visits.
  • Major change in content: the updated checklists now include only milestones at the 75^{ ext{th}} ext{ percentile} or higher; previously, there were two sets (an earlier, 50th percentile set in the left column and the 75th percentile red-flag milestones in the purple box).
  • Result: Fewer milestones per checklist (about 22 o 13 per checklist) and the addition of screening reminders at the bottom of the page (blue box):
    • “You know your baby’s best, don’t wait.”
    • Encourage talking with the pediatrician if concerns exist.
    • Direct families to seek referrals for specialists and to contact state/territory early intervention programs (EI).
  • The update is not pandemic-driven; the development work and revisions were completed in 2019, with parent testing in 2020.
  • The 2022 update has been interpreted by some on social media as shifting milestone expectations; the presenters clarify that the change was about aligning milestones with data and making the tool clearer for action, not shifting when children should meet milestones.

What Changed: Specific Milestones and Structural Changes

  • Removal of the left-column 50th percentile milestones and the old 50th percentile set.
  • Retention of milestones at the 75^{ ext{th}} percentile or higher, which reduces the need for a wait-and-see approach when a milestone is missed.
  • The old “red flags” (purple box) were aligned with the 75^{ ext{th}} percentile in the new checklists; the updated checklists maintain a consistent threshold for concern.
  • Crawling as a milestone was removed from the updated checklists due to insufficient normative data for inclusion; crawling is still valuable clinically but not universal across populations.
  • The new checklists emphasize universal suitability and cultural applicability and provide explicit guidance for action if concerns arise.
  • The new checklists include a blue section at the bottom with action steps: discuss with pediatrician, consider developmental screening, refer to EI, and find EI resources via CDC.gov.

Crawling Change and Its Implications

  • Crawling was a debated item within the OT community; it was removed from the revised checklists.
  • Reason: literature review found little or no normative data to support its inclusion as a universal milestone.
  • The authors emphasize that this does not negate the clinical importance of crawling; therapists will continue to assess motor development, and clinicians may still examine and document crawling, but it is no longer a universal checklist milestone.
  • The authors argue for a public-health tool that remains clinically relevant while respecting cultural and developmental variability.
  • Kate notes that not all children crawl; pediatricians who met with the CDC ambassadors underlined that crawling is not universal, reinforcing the public-health orientation of the tool.

How the Milestone Update Affects Occupational Therapy Practice

  • For practitioners in prevention/population health: use the checklists to promote conversations, public health messaging, and parental engagement.
  • For direct intervention after referral: use more refined evaluation tools beyond the checklists (e.g., OT-specific assessments, comprehensive evaluations).
  • The checklists support conversations with families between scheduled screenings and can facilitate timely referrals for screening and EI services.
  • OT role in a team: contribute parental concerns, family context, and daily routines to the early identification process; support community-based implementation (e.g., WIC pilot programs, Head Start partnerships).
  • OT’s expertise in daily occupations and co-occupations helps interpret parental concerns and translate them into questions families can discuss with clinicians.
  • The updated tool aligns with public health goals but does not replace professional clinical judgment or targeted assessment.

Practical Tools and Resources Mentioned

  • Apps and digital tools:
    • An app to help families track milestones and upcoming well visits (language options include English and Spanish).
  • Books for families and multi-year monitoring:
    • Milestone books used in family foundations/home visiting programs to promote parent–child interaction and milestone awareness.
  • Growth charts and immunization information included in growth tracking resources (growth, milestones, immunizations, etc.).
  • State-level and local partnerships:
    • Wisconsin example: a community connector working with agribusiness and dairy trucking networks to promote early identification at the local level.
  • Additional guidance for practitioners:
    • Printable sheets with language to explain what to do if a pediatrician expresses a wait-and-see attitude.
    • Suggestions for prevention work: partner with WIC programs, EI, and other community services to implement checklists and support early identification.

Practical Takeaways for Clinicians and Families

  • The milestone checklists are best used as a conversation starter and public health tool, not as a diagnostic instrument.
  • Always combine developmental monitoring with standard screening during well visits, as recommended by the AAP.
  • If concerns arise, pursue screening and, if indicated, a comprehensive evaluation.
  • The 75th percentile threshold is the guiding criterion for what the checklist highlights as a potential concern.
  • The blue reminder section of the updated checklists provides concrete steps and resources for families to act on concerns.
  • Practitioners should remain vigilant about crawling and other motor milestones in clinical assessment, even if not on the public-health checklist.
  • OT practitioners can contribute by joining state Act Early teams and ambassador programs, and by connecting with local public health and EI services to tailor implementation to their communities.

How to Get Involved and Build a Career-Long Public Health Focus

  • National level: apply to be an Act Early Ambassador via the Learn the Signs Act Early website; ambassadors collaborate with the CDC and other national bodies.
  • State level: join or form an Act Early team; Massachusetts example mentioned; many states have a volunteer board or team to implement LSae in local systems.
  • Local/community level: engage with EI, WIC, early care and learning centers, home visiting programs, NICUs, pediatric practices, and public health departments to integrate developmental monitoring resources.
  • OT practitioners can leverage their expertise to educate families, interpret screening results, and support early identification within a public health framework.

Golden Nuggets (Key Takeaways from Guests)

  • Kris Barnekow: Embrace a family-centered approach; listen to family concerns; understand everyday activities and co-occupations; identify strengths and barriers impacting families.
  • Kate Barlow: Build and lean on a strong, supportive team; public health work expands opportunities and impact; surround yourself with a team to sustain motivation and effectiveness.

Final Reflections and Next Steps for Practitioners

  • The updated milestones emphasize specificity and actionability, while reducing the total number of items per checklist to streamline conversations.
  • The change is not about moving the expected timeline for most children, but about aligning items with data and providing clearer guidance for action.
  • If you want to explore further, review the Zubler et al. article on developmentally informed milestones for a detailed methodology and the Pediatrics article titled “Evidence Informed Milestones for Developmental Surveillance Tools.”
  • For practical implementation, consider joining your state Act Early team, connecting with your state ambassador, and exploring partnerships with WIC, EI, and local pediatric practices to promote early identification and family engagement.