Learn the Signs. Act Early • Cindy Arstein-Kerslake, Coordinator MAP to Inclusion and Belonging [email protected]• Gina Guarneri MA Program Coordinator UC Davis CEDD [email protected]• Larry Yin MD, MSPH, Director Clinical Services USC UCEDD [email protected]
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Learn the Signs. Act Early - amchp.org · Learn the Signs. Act Early •Cindy Arstein-Kerslake, Coordinator MAP to Inclusion and Belonging ... • Denver-II Developmental Screening
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– 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
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
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MAP’s Purpose
• Primarily geared toward providing resources to
support child care providers in implementing
inclusive practices for children with disabilities