First steps in identifying children with

neurodevelopmental disabilities: Developmental and behavioral surveillance

and screening

Goals for LENDs from the CAA of 2006

Trainees in LEND programs should 1) receive a balance of academic, clinical, and community opportunities, 2) work towards being culturally competent, 3) be able to evaluate, diagnose or rule out, develop, and provide evidence-based interventions to individuals with autism spectrum disorders and other developmental disabilities (DD) after completion of their clinical training, and 4) demonstrate an ability to use a family-centered approach.

Combating Autism Act of 2006, Sec. 399BB (e)(1)(A)(B)).

Time Is of the Essence in Child Development

• Bright Futures and AAP guidelines recommend that primary care providers survey and screen their patient’s development on regular schedules

• While new screening tools are easier to use and more accurate, screening does present an apparent burden to routine practice

• But, everything we know says it’s worth the effort – EARLY INTERVENTION OPTIMIZES OUTCOMES

Screening and Surveillance

• Surveillance—Periodic look at a child’s overall development (e.g., informal assessment of children’s development at every well-child visit)

• Screening—Comparison of a child’s development to a standard; confirms normal development or identifies “red flags”

• Assessment—In-depth determination of delay or disability (e.g., completion of the Bayley Scales as part of a psychological assessment)

• Scheduled surveillance and screening occur at the same time as multiple other clinical demands

Screening and Surveillance It’s more than just height and weight...

18 Month Visit

Screening and Surveillance It’s more than just height and weight...

18 Month Visit

There is so much to do in an typical well-child visit!

• Barriers to Screening • Time constraints• Concerns about practice management • Patient flow • Cost to families • Cost/reimbursement to the practice• Practitioner confidence in discussing results• Which screen, how to administer, and who scores?

And, so many visits – And standardized forms with lower requiremnts

!

• Time constraints• Concerns about practice management • Patient flow • Cost to families • Cost/reimbursement to the practice• Practitioner confidence in discussing results• Which screen, how to administer, and who

scores?

Why Do Developmental Screening?• 16-18% of children (birth to 18) in U.S. have developmental or

behavioral disorders; approximately 13 % of two-year olds• BUT, only 25% of children under age three eligible for early

intervention are identified, and less than half that number in Georgia!

• Children with developmental delays are entitled to services from birth through age 22

• Better long-term outcomes for participants:– higher graduation rates, employment – delayed pregnancy, decreased criminality

• $30,000 to >$100,000 benefit to society

Screening Makes a Difference!

• Without screening– 70% of children with developmental disabilities not

identified– 80% of children with mental health problems not identified

• With screening– 70% to 80% of children with developmental disabilities

correctly identified– 80% to 90% of children with mental health problems

correctly identified

Early Intervention• Builds on a child’s strengths, provides the best

chance for reaching potential• Addresses areas of delay or weakness• Provides support and education to the family

(e.g., parents, caretakers, siblings, etc.)• Helps to monitor child for secondary

developmental problems• Thus, important to act early if a delay is suspected

Developmental Screening Considerations

• Two mechanisms of administration– Parent completed– Provider administered

• Two major categories– General developmental – Autism specific

When Should You Screen?

• The AAP policy statement recommends screening at 9, 18, and 24 or 30 months for general development

• At 18 and 24 months for autism• Before kindergarten for readiness• If parent or pediatrician/primary care provider

has a concern

Developmental Screening Tools• Parent-completed

– Ages and Stages Questionnaire (ASQ)– Parents’ Evaluations of Developmental Status (PEDS)– Child Development Inventory (CDI)– Pediatric Symptom Checklist (PSC)– Modified Checklist for Autism in Toddlers (MCHAT)

• Provider-administered– Bayley Infant Neurodevelopmental Screener (BINS)– Denver Developmental Screening Test II (DDST)– Brigance Screens II

Developmental Screening Tools• Many side-by-side comparison charts

– Age range– Cost– Availability– Domains assessed– Scoring – Accuracy (sensitivity and specificity) – Time required to administer and score

Early Signs Are Critical• Increasing empirical support that delayed milestones

in how children play, learn, speak, and act are a sign of developmental disability, including autism

• The CDC’s Learn the Signs / Act Early campaign educates parents about child development, including early signs of autism spectrum disorders (ASDs) and other developmental delays, and encourages developmental screening and intervention

Milestone Moments (1)• Let’s take a look!• Uses parent-friendly language – looking at

“how your child plays, learns, speaks, and acts” • Provides milestones for 2, 4, 6, 9, 12, and 18

months, then for age 2, 3, 4, and 5 years• Milestone time points are aligned with the

Bright Futures schedule for well-child visits, endorsed by the AAP

Milestone Moments (2)• Milestones are organized by domains:

– Social/Emotional– Language/Communication– Cognitive– Movement/Physical Development

• Ten to 20 nurturing activities for parents and children are provided at each age

• Five to ten “Act Early” signs are provided at each age – we sometimes refer to these as “red flags”

By the Way• Milestone Moments also available in Spanish• Some concern about literacy level of the

materials; GSU researchers are also testing the effectiveness of line drawings vs. text for 24-month milestones

Copies Others

Stands on Tip-Toes

Parents Struggle for Answers• Early signs are often subtle • Children may present with a mix of strengths and

weaknesses• Some children progress on schedule and then regress• Parents may suspect their child has a hearing loss• Parents may report their child is “too good”• Pediatricians are most often the first person that

parents speak to about their concerns

CDC on Learning the Signs• Most recent CDC data – average of 1 in every 110

children in certain parts of the U.S. has an ASD • Average age at which children are diagnosed with

an ASD is 4½ years, and one year later for African-American children

• Late age of diagnosis leads to delayed access to much needed intervention

• Acting early can make a real difference!

Referrals for Developmental Services

• If red flags are raised in screening,• Or if a child is experiencing difficulties that

interfere with normal development,• Or if a child is not progressing as expected,• Then further assessment is indicated

To whom to pediatricians refer for follow-up assessments and services?

• Specialists– Developmental Behavioral Pediatricians– Psychologists– Speech Pathologists, PTs and OTs

• Other agencies doing evaluations• Early Intervention / Babies Can’t Wait• Pre-school Special Education

Early Intervention EligibilityIn Georgia, Babies Can’t Wait serves children from birth to age three, regardless of income, who:• Have a diagnosed physical or mental condition

which is known to result in a developmental delay, such as blindness, Down syndrome, or Spina Bifida• Have a diagnosed developmental delay confirmed by a qualified team of professionals• Anyone can refer a child—MD, RN, parent, childcare

provider

Babies Can’t Wait: the Georgia Early Intervention (Part C) Program

What Occurs?1. Intake2. Developmental Evaluation3. Eligibility Determined4. If Eligible, Development of IFSP5. Receipt of Services – should begin within

45 days of signing consent

Special Education• Serves children from 3 to 21 years old• Every child has right to evaluation

– Anyone can request, but parent must consent– Must be conducted in child’s primary language– Should begin within 90 working days of request – Should be repeated every three years

On Line Resources

Centers for Disease Control and Prevention. Learn the Signs. Act Early. at http://www.cdc.gov/ncbddd/autism/actearly/

Bright Futures for Health Care Professionals at http://brightfutures.aap.org/index.html

Developmental Behavioral Pediatrics Online at http://www.dbpeds.org/

Locating Community-Based Services to Support Children and Families at http://www.mchlibrary.info/KnowledgePaths/kp_community.html

National Dissemination Center for Children with Disabilities (NICHY), at http://www.nichcy.org/states.htm. Lists state-based resources and other information

National Early Childhood Technical Assistance Center (NECTAC) www.nectac.org/ Provides contact information for state Part C coordinators and other early childhood resources.