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Learn the Signs. Act Early
• Cindy Arstein-Kerslake, Coordinator
MAP to Inclusion and Belonging
• Gina Guarneri MA Program Coordinator
UC Davis CEDD
• Larry Yin MD, MSPH, Director Clinical Services
USC UCEDD
CDC’s Learn the Signs. Act Early.
(LTSAE) program aims to improve
early identification of children with
autism and other developmental
disabilities so children and families
can get the services and support
they need.
LTSAE http://www.cdc.gov/actearly
• Health education campaign
• Act Early initiative
• Research and evaluation
LTSAE http://www.cdc.gov/actearly
• Information for parents, health care
providers, early educators, and others
• Developmental Milestones: 2 & 7 months;
1, 2, 3, 4, 5 years
• Links to organizations, tools, resources,
interactive tools for parents
California Act Early Systems Grant
• Project Objective: Improve access to
information about developmental
milestones and referral to evaluation and
services through collaboration with state
programs to promote and implement
developmental screening and early
identification.
California Act Early Systems Grant
• Partners
– UC Davis CEDD (lead)
– California Home Visiting Program/MCAHP/CDPH (co-
lead)
– Infant Development Association of CA
– MAP to Inclusion and Belonging/WestEd Center for
Child and Family Studies
– Project LAUNCH/WestEd Center for Prevention and
Early Intervention
– USC UCEDD
Autism and the Life Course, Early Screening,
& Learn the Signs, Act Early
Larry Yin, MD, MSPH
Associate Professor, Clinical Pediatrics
USC Keck School of Medicine
Director, Community Services-USC UCEDD
Medical Director- Boone Fetter Clinic
Children’s Hospital Los Angeles
Disclosures
I wish had disclosures
Today’s Presentation
• Autism and the Life Course
• Importance of Learn the Signs, Act Early
– Early Screening
– Early Identification
– Early Treatment
• Recognition of Early Signs
• Tools
The Life Course Perspective
Age
Functional capacity
Health promotion,
Protective factors
Risk factors,
Stressors
Risk reduction
The Life Course
Autism, Early Childhood, Negative Factors
Age
Functional capacity
1 2 3 4
Delayed
Assessment
Delayed
Screening
Delayed
Intervention
Delayed
Education
Parent/Caregiver
Factors
Genetics
Environment Family Factors
Child Factors
Autism, Early Childhood, Positive Factors
Age
Functiona
l capacity
1 2 3 4
Early
Screening
Early
Assessment
Intervention
Early Education
Prenatal Health
Parent/Caregiver Factors
Environment
Family Factors
Child Factors
Integrity
ACT EARLY
What is screening?
• Use of a brief, objective, and validated instrument
• Goal to help differentiate children that are “probably ok” vs.. those “needing additional investigation”- those with unsuspected deviations from normal
• Performed at a set point in time
– 9, 18,(24), 30 months
• Objective vs. subjective impressions
• Results always interpreted in context
– Never in isolation
– Aid to ongoing surveillance
ACT EARLY
Why Screen?
• Most obvious problems are the least prevalent
• “New morbidities”
• Cannot rely solely on clinical judgment for identification of developmental problems
ACT EARLY
WHY SCREEN?
CLEARLY NORMAL
CLEARLY ABNORMAL
?
ACT EARLY
Benefits of Screening
Assists in sorting children into 3 categories:
• Needs additional evaluation - Did not pass screen
• Needs close monitoring/surveillance- Passed screen but has risk factors
• Needs ongoing monitoring in the context of well-child care - Passed screen and has no known risk factors
ACT EARLY
Screening Challenges
• Use of informal checklists of developmental skills – Lack proof that they predict developmental status
– Lack criteria to indicate when a referral is indicated
• Informally eliciting parents’ concerns (Are you worried about your child’s development?) – Parents often not sure if they are worried
– The word “development” is understood by only ~50% of parents
• Accuracy of clinical judgment – Detects fewer than 30% of children who have
developmental disabilities
Developmental Screening Tools
Developmental screening tools are used to
enhance the surveillance process and increase
detection rates
– Parent-completed questionnaires
– Directly administered instruments
ACT EARLY
Standards for Screening Tests
• Standardized on national sample
• Proof of reliability
– ability of a measure to produce consistent results
• Evidence of validity
– ability of a measure to discriminate between a child at
a determined level of risk for delay (i.e.. high,
moderate) from the rest of the population (low risk)
ACT EARLY
Standards for Screening Tests
Accuracy in ability to categorize as measured by:
Sensitivity: accuracy of the test in identifying delayed
development
Specificity: accuracy of the test in identifying individuals
who are not delayed
For developmental screening tests, Sensitivity and specificity of 70-80% are
acceptable
Can parents be counted upon to give accurate
and good quality information?
• Screens using parent report are as accurate as those
using other measurement methods
• Tests correct for the tendency of some parents to over-
report
• Tests correct for the tendency of some parents to
under-report
YES!
ACT EARLY
Screening Pitfalls
• Relying on informal methods (i.e. checklists) – provide no validated criteria for referral
– have unknown reliability
– Ignores the asymptomatic who are those most in need of screening
• Using a measure not suitable for primary care (i.e.. too long) – Results in two things
• using tests only with selected patients, usually those with observable problems
• nonstandard administrations
ACT EARLY
Developmental Screening Instruments:
General Office
• Ages and Stages Questionnaire
• Battelle Developmental Inventory (BDI) Screening Test
• Bayley Infant Neurodevelopmental Screener (BINS)
• Brigance Screens-II
• Infant Development Inventory
• Child Development Review
• Child Development Inventory (CDI)
• Denver-II Developmental Screening Test
• Parents' Evaluation of Developmental Status (PEDS)
• M-CHAT
CDC’s Learn the Signs. Act Early. (LTSAE) • Program aims to improve early identification of
children with autism and other developmental
disabilities
• Why? So children and families can get the services
and support they need.
• Health education campaign
• Act Early initiative
• Research and evaluation
• http://www.cdc.gov/actearly
LTSAE: www/cdc.gov/actearly
• Information for parents, health care providers, early educators, and others
• Developmental Milestones: 3 & 7 months; 1, 2, 3, 4, 5 years
• Links to organizations, tools, resources, interactive tools for parents
ACT EARLY
Early Screening Tools
• “Activated Parent”
– CDC’s Learn the Signs: Act Early • http://www.cdc.gov/actearly
• Free Materials for parents/providers
Regional Center and Early Start
Overview of Early Start
• 10/1/93-California implemented Part H of the
Individuals with Disabilities Education Act (IDEA)
• Provided an Early Intervention Program for Infants and
Toddlers with Special Needs
• Federal program was further supported by the California
Early Intervention Services Act
• Early Intervention Services provided through the
Regional Center system and local education programs
Early Start
• Early Start Program is California's response to federal legislation ensuring that early intervention services to infants and toddlers with disabilities and their families are provided in a coordinated, family-centered network.
• Initial Evaluations and assessments as well as the initial
Individualized Family Services Plan be developed within 45 days of
the referral
• Because of California budget cuts, changes have been made to the Early Start Program
Early Start, Before the Fall of 2009 • Based on the child's
assessed developmental needs and the families concerns and priorities as determined by each child's Individualized Family Service Plan (IFSP) team, early intervention services may have included:
• assistive technology
• audiology
• family training, counseling, and home visits
• health services
• medical services for diagnostic/evaluation purposes only
• nursing services
• nutrition services
• occupational therapy
• physical therapy
• psychological services
• respite services
• service coordination (case management)
• social work services
• special instruction
• speech and language services
• transportation and related costs
• vision services
Early Start Now-Criteria
• Developmental delay (applies to initial eligibility only and is not to be applied to continuing eligibility of infants and toddlers. If the infant or toddler is determined to be eligible under either (1) or (2) below, eligibility will continue until 36 months of age or final transition from the Early Start Program
1. Birth-24 months
• Developmental delay is 33% or greater between the current level of functioning and the chronologic age in one of five areas
1. Cognition
2. Physical (fine/gross motor, vision, hearing)
3. Communication
4. Social/emotional
5. Adaptive/self help
2. Age 24 months or older
• Developmental delay is 50% or greater in one of the above 5 areas
• Developmental delay is 33% or greater in two or more of the above 5 areas
Early Start Now-Criteria
• Established Risk
1. Infant or toddler has a condition which has a high probability of resulting in developmental delay
2. Infant or toddler has a solely low incidence disability
• A developmental delay shall not be determined based on:
1. Temporary physical disability
2. Cultural or economic factors
3. The normal process of second language acquisition
4. Manifestation of dialect and sociolinguistic variance
Who Provides Early Start Services?
•Early intervention services are individually
determined.
•Local education agencies (schools) are
primarily responsible for infants and toddlers
with solely physical disabilities (eg. vision,
hearing, or solely orthopedic impairments).
•Regional Centers are responsible for all other
children eligible for Early Start.
How long does Regional Center
eligibility last?
•Remain eligible for Regional Center services unless your
condition improves.
•Eligibility continues even if you move to a different
Regional Center area.
•After age 3, one of the qualifying conditions—Intellectual
Disability, Cerebral Palsy, Epilepsy or Autism must be
present for services to continue. This is a major point of
confusion for families who believe after age 3 their child
can no longer be served.
How to Refer to a Regional Center
-A telephone call to the Regional Center is all
that is necessary to initiate a referral. The
phone call should be from the client or the
client’s family, but you can assist if necessary.
-Family Resource Network can help!
-No referral forms are necessary!
-No eligibility requirement for family income,
immigration/residency status or age!
Thank-you
MAP to Inclusion &
Belonging…Making Access Possible
• Funded by the Child Development Division of
the California Department of Education
(CDD/CDE) with quality improvement funds
• Currently operated by WestEd Center for Child
and Family Studies
• Project originally started from a federal project in
1998, continued with CDD/CDE funding
• Website developed in 2004 & updated regularly
38
MAP’s Purpose
• Primarily geared toward providing resources to
support child care providers in implementing
inclusive practices for children with disabilities
from birth to 21 years of age in their programs
• Provides comprehensive resources related to
children with disabilities useful to families and
professionals
• Actively seeks to meet the needs of all
stakeholders – welcome suggestions, questions
and input
39
Where to Find MAP
• Go to www.CAinclusion.org
• Click on the MAP logo
• You’ll arrive at the Welcome Page with the
complete menu
40
MAP Project Resources
Found at the top of the blue menu:
• CA CSEFEL
• County Specific Resources
• Hot Topics
• Inclusion Works!
• MAP Training PowerPoints
• Reports and Useful Documents
42
MAP Training PowerPoints
• Talking to Parents When You Have Concerns
About a Child in Your Care
• Overview of California Early Start – Updated as
of October 2009 and 2011
• Transition in Early Childhood at Age Three for
Children with Special Needs
• Inclusion Works!
43
County Specific Resources
• County specific
resources that
support inclusion
• Click on the county
name or map
44
County Activities: Organizations*
• Regional Center
• Family Resource Center
• SELPA
• Resource and Referral Agency
• Local Planning Council
• County First 5
• County Office of Education
• Early Head Start/Head Start
• * See the “Guide to County Resources”
45
• County Inclusion
Committee
• Support for Challenging
Behavior
• Teaching Pyramid
• Downloadable
Resources
• Historical Data
County Specific Resources:
Inclusion/Behavior Resources
46
Hot Topics
New Resources Collected to Meet Needs
Identified by the Field
• Early Identification: Learn the Signs Act Early
(New!)
• Video Collection (New!)
• Coping with Trauma
• Family Engagement
• Healthy Mind, Healthy Body
• School Age and Beyond
47
Early Identification: Learn the Signs Act
Early • Developed in collaboration with
the CDC Learn the Signs Act
Early Grant partners.
• Features the CDC resources
and MAP resources to support
and promote early identification.
• Provides a framework for early
identification and referral
services for families, early care
and education providers, home
visitors and health care
providers.
48
Early Identification Framework
• Healthy Development and Developmental
Milestones
• Working with Families
• When Concerns Arise
• Developmental Screening
• Referral for Evaluation and Assessment
• Community Resources/Support for Families
49
Talk to Us
• Complete our survey and let us know how we can improve our site. All responses are anonymous and very much appreciated.
• Join our Mailing List to get our newsletter to hear about new resources and updates. Leave your email address with us and we’ll add you.
• You can also let us know what you’re doing with inclusion by emailing us at [email protected]
• Thanks for visiting MAP!
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