In our first of a series of webinars curated for the provider community by fellow child healthcare professionals, Dr. Emily and Dr. Jin Lee talk about the importance of early action and intervention, how to recognize delays, and best practices in neuropsychological testing and evaluation.
This presentation can be supplemented with our video recording on BabyNoggin's Youtube. The video webinar recording will be available 3/2/18. Thank you!
4. Overview
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1 in 4 children under age 5 are at risk of
developmental delays in the US
Source: U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau. (2014). The Health and Well-Being of
Children: A Portrait of States and the Nation 2011-2012. Rockville, Maryland: U.S. Department of Health and Human Services.
5. Overview
Source: U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau. (2014). The Health and Well-Being of
Children: A Portrait of States and the Nation 2011-2012. Rockville, Maryland: U.S. Department of Health and Human Services. 5
Parental Concerns: child development
for children 4 months - 5 years of age
Risk of developmental delay for
children 4 months - 5 years of age
6. Overview
Source: U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau. (2014). The Health and Well-Being of
Children: A Portrait of States and the Nation 2011-2012. Rockville, Maryland: U.S. Department of Health and Human Services.
U.S. Department of Health and Human Services Health Resources and Services Administration. The Health and Well-Being of Children: A Portrait of States and the Nation 2011-2012.
Retrieved from https://mchb.hrsa.gov/nsch/2011-12/health/child/childs-health-status/risk-developmental-delay.html.
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Children 4 months - 5 years of age at moderate or high risk of delay: race/ethnicity
7. 7
Overview
Children develop to 90% of
adult brain size by age 3.
Delayed intervention means
changing brain function
forever.
Source: Harvard University Center for the Developing Child. (2017). InBrief: The Science of Early Childhood Development. Retrieved from
https://developingchild.harvard.edu/resources/inbrief-science-of-ecd/.
8. Costs + Consequences
● 1 Million kids are underdiagnosed with disabilities every year
● Academic underachievement
● Under or unemployment
● Lack of friends and other supportive relationships
● Economic consequences - James Heckman $30,000 - $100,000 savings
per year if we invest in early child care
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Source: Karoly, L., Kilburn, R., and Cannon, J. (2005). Early Childhood Interventions: Proven Results, Future Promise. Santa Monica, CA: RAND Corporation.
Heckman Equation. Invest in early childhood development: Reduce deficits, strengthen the economy. (2017).Retrieved from https://heckmanequation.org/resource/invest-in-early-child.
9. 50%
of doctors
do not
screen
Early Intervention and Screening Issues
80%
of children are
not screened
21%
of parents
reported
Rank:
43rd
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Source: Center for Disease Control and Prevention. 2018. Child Development. Retrieved from https://www.cdc.gov/ncbddd/childdevelopment/features/key-findings-dev-screening.html.
10. 10
Developmental Monitoring vs. Screening
-Performed by parents
and teachers
-Ongoing process
-Ex: “Learn the Signs.
Act Early.” Milestones
checklist
-Formal process
-Recommended by the
AAP 9, 18, 24, 30
months
-Done by health
professionals and may
be done by trained
teachers
-Validated (ASQ,
PEDS)
Both
Look for
milestones
Important: track
signs of dev. and
identifying
concerns
Monitoring Screening
11. Risk factors
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● Abuse or neglect
● Parents with < HS education
● Parental mental health problems
● Housing + food instability
● Ethnic or linguistic minority
● 3+ children
Source: Center on the Developing Child. Harvard University 2008. Retrieved from
https://developingchild.harvard.edu/resources/inbrief-the-impact-of-early-adversity-on-childrens-development/.
12. Common Causes
12Source: My Child Without Limits. 2018. What Puts a Child at Risk for Developmental Delay?. Retrieved from
http://www.mychildwithoutlimits.org/understand/developmental-delay/what-puts-a-child-at-risk-for-developmental-delay/.
● Genetic factors
● Premature birth, excessive drugs or drinking pre-birth
● Illness, poisoning or brain trauma
● Environmental factors: lack of social stimulation
13. ● Individuals with Disabilities Education Act (IDEA) requires states to identify, locate, and
evaluate all children with disabilities
● American Academy of Pediatrics (AAP) recommends screening at well-child visits
● American Academy of Neurology (AAN) and the Child Neurology Society (CNS) call for
screening at all well-child visits
● Medicaid’s Early and Periodic Screening, Diagnosis and Treatment (EPSDT) requires
screening at each well-child visit.
Source: American Academy of Pediatrics. (2001). Developmental Surveillance and Screening of Infants and Young Children. Pediatrics,108(1), 192–196.
American Academy of Neurology and the Child Neurology Society. (2000). Practice parameter: Screening and diagnosis of autism. Neurology, 468–479. 13
Screening Mandate
16. OO
16Source: Easter Seals. (2013). Our Nation’s at Risk. Retrieved from Make The First Five Count.org.
http://es.easterseals.com/site/DocServer/Our_Nations_Children_at_Risk_full_report.pdf?docID=146598
Not receiving enough intervention
Not receiving intervention services
Receiving intervention services
Intervention needs are not met
Intervention needs are met
17. Outline
● The Wait-And-See Approach may be harmful
○ Changes in the brain may occur long before developmental issues
are observed
● When to refer to a developmental specialist
● The role of a neuropsychological evaluation
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18. The “Wait-And-See” Approach
● Broad range of normal development in early childhood
● Historically, cautious approach to diagnosing developmental delays
○ Conditions sometimes went unrecognized and unsupported
○ Interventions were far more limited than they are now
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19. Address Delays with Accelerated Development
Gap remains the same if a child has an appropriate rate of skill development.
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20. Address Delays with Accelerated Development
Gap grows if a child has slower rate of skill development.
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21. Flaws With The “Wait-And-See” Approach
● Research is increasingly recognizing the value of early intervention
● Children with milder autism who received early and intensive therapies may not meet
criteria for autism later in childhood (Fein et al., 2014)
● Signs of a developmental disorder may emerge long after brain-based changes have
occurred
● Once signs are evident, we may already be very late in addressing developmental
concerns
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22. MRI Changes Before Behavioral Evidence of Autism
● Clinically, signs of autism emerge around 2 years of age
● Small study of children at high risk of developing autism (Hazlett et al., 2017)
○ Children later diagnosed with autism showed:
■ Faster growing cortical surface area between 6 and 12 months
■ Faster growing brain volume between 12 and 24 months (coinciding with
the emergence of behavioral signs)
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23. MRI Changes Before Behavioral Evidence of Autism
Colored regions indicate areas of the cortex that grew significantly faster in infants who were later
diagnosed with autism (Hazlett et al., 2017)
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24. Fragile X
● Most common heritable cause of autism
○ A number of studies have shown that children with Fragile X can be treated
effectively with behavioral therapy if it is started when they are 12 to 18 months
old
● Fragile X protein is essential for refining the brain’s ability to process sensory
information
○ Absence of this protein during a critical period of early development causes
significant AND permanent changes in the way the brain is wired (Doll, Vida, &
Broadie, 2017)
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25. Early Detection and Intervention
● Studies like these herald a new understanding of the neurological underpinnings
of developmental disorders
● Ability to recognize brain-based changes prior to symptom onset is likely to
grow
● Entirely new approach of treating conditions BEFORE they are evident
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26. What Does This Mean?
● Once signs of a possible developmental problem emerge, we have already lost
valuable time to mitigate its impact
● Be proactive
○ Consider referrals for children at high risk BEFORE concerns arise:
■ Sibling with a developmental disability/strong family history
■ Premature birth
■ Known genetic or neurological disorder
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27. Referring to a Specialist
● When children are at high risk of developmental issues
○ Medical/neurological conditions
○ Family history of developmental disorders
● When parents or teachers are expressing significant concerns
● When you have significant concerns
● How do you define “significant concerns”?
○ No official cut-point
○ I recommend a lower threshold of concern for:
■ Language delays
● Broad impact on cognitive and social development
■ Delays across more than one domain
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28. Neuropsychological Testing
● All neuropsychologists have completed training in clinical psychology plus
specialty training in brain-behavior relationships:
○ Brain development
○ Brain function
○ Brain response to something unusual
■ Injury
■ Alterations in typical brain development
■ Alterations in input (e.g., deficits in hearing, vision, etc.)
■ Exposure to atypical life experiences (abuse, neglect, trauma)
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29. Neuropsych vs. Psych. or Psycho-Ed. Testing
● Tests may be the same
● Differences most common in:
○ Medical history
○ Referral question
■ Is medical history a contributing factor
■ Is more medical work-up needed
■ Is there a common underlying factor
○ Interpretation/Explanation
■ Why is a child struggling in these areas
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30. Neuropsychological Testing: Infants & Young Children
● Art vs. science
● More “error” in test scores than with older children
● Most tests are hands-on
● Tests with minimal/no language or motor demands exist
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31. What Can Testing Help With?
● Getting a diagnosis
○ “I don’t want my child labelled”
○ Making sure a diagnosis is accurate
○ Ruling out diagnoses that are not appropriate
● Determining what the underlying problem is
○ For example, is a child not learning well because of issues with:
■ Attention
■ Language
■ Memory
■ Processing speed, etc.
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32. What Can Testing Help With?
● Determining what services/supports will be most effective
○ Early and appropriate intervention is key
○ Prioritizing areas of need
● Monitoring progress
○ Comparing a child to their peers and also to themselves
○ Establishing a baseline
● Planning for school transitions
○ What supports does a child need as they transition to elementary, middle,
and high school
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33. What Can Testing Help With?
● Helping families cope
○ Fear of what may be wrong is often worse than knowing what a child’s
needs are
○ Anxiety, grief can be processed and then channeled into maximizing a
child’s potential
● Giving families an action plan
○ Big picture view of strengths and weaknesses
○ Recommendations for what may help both in school and at home
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34. Case Study: Sammy
● Parent concerns started around 12 months and grew over time
● Developmental evaluation at 20 months
○ Bayley-3: Cognitive 9th percentile, Motor Skills 16th percentile, Language
<1st percentile
○ ADOS-2: Autism
○ Daily Living Skills 36th percentile
● Intervention initiated:
○ 20 hours ABA, 1 hour speech, 1 hour OT
○ Intensive parent training
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35. Case Study: Sammy
● Repeat evaluation at 51 months
○ Hyperfocus on animals, errors in speech, generally good eye contact,
engaged in conversation, used gestures
○ IQ in the average range
○ No concerns with fine motor skills, learning & memory
○ Language skills generally around 25th percentile (previously <1st
percentile)
○ Mild weaknesses in pre-academic skills
○ ADOS-2 comparison score of 4, parent ratings no longer elevated
● Intervention plan
○ General education, co-taught classroom
○ 2 hrs/week of speech, slowly reduce ABA from 8hrs/week to 4hrs/week
○ Continue to work on social functioning, emotional control
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37. Upcoming Webinar
Developmental Screening and its Current State of Practice
Date: Thursday, March 15, 2018, at 11:30 AM PST/2:30 EST
For information or to register please email info@babynoggin.com.
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Dr. Gellasch received her Doctor of Philosophy from the the Villanova
University M. Louise Fitzpatrick College of Nursing. Her research interests
are in the area of developmental screening behaviors in primary care. She is
a board certified family nurse practitioner with clinical experience in primary
care and she has practiced in the neonatal intensive care unit and pediatric
unit as a registered nurse. Dr. Gellasch currently owns and operates an
educational grant writing business focused on the development and
execution of continuing education for healthcare publishing companies.
38. Contact Information
Dr. Emily Papazoglou
Oxford-trained Neuropsychologist
Adjunct Assistant Professor
Emory University School of Medicine
www.DrEmilyNeuropsych.com
dremilyneuropsych@gmail.com
Dr. Jin Lee
Oxford-trained Child Psychologist
Founder & CEO
BabyNoggin
www.babynoggin.com
info@babynoggin.com
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39. About the Speakers
Dr. Emily is a board-certified neuropsychologist and an adjunct assistant professor in the Department of Rehabilitation Medicine at Emory
University School of Medicine. Dr. Emily has a private practice in Atlanta, Georgia, where she specializes in working with young children
with developmental delays (see www.DrEmilyNeuropsych.com). Dr. Emily graduated from the University of Oxford in England with a B.A.
with honors and an M.A. in psychology and physiology. She then completed an M.A. and Ph.D. jointly in clinical
psychology/neuropsychology and behavioral neuroscience at Georgia State University. This was followed by a residency at Emory
University School of Medicine and a two-year post-doctoral fellowship at the Kennedy Krieger Institute/Johns Hopkins Hospital, both in
clinical neuropsychology.
Dr. Jin Lee is CEO of BabyNoggin, a digital health company focused on solving issues in child healthcare. She is an Oxford-trained child
psychologist, and has over a decade of experience in healthcare, innovation and research. Dr. Lee was formerly a committee member
for the American Heart Association and worked in the innovation and venture arms of Humana and Providence St. Joseph Health. She is
a mentor for multiple health accelerator programs and startups in Silicon Valley. Dr. Lee has been featured on numerous healthcare
blogs and has been a featured speaker at multiple child health-related conferences such as the Aspen Institute Children's Forum and
National Early Head Start.
Dr. Jin Lee
Dr. Emily Papazoglou
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