Improving Early Identification and

Intervention for Children at Risk

for Autism Spectrum Disorder
David A. Rotholz, PhD,a Anne M. Kinsman, PhD,b Kathi K. Lacy, PhD,c Jane Charles, MDd

OBJECTIVES: To provide an example of a successful, novel statewide effort to increase early abstract
identification of young children at risk for autism spectrum disorder (ASD) using a 2-tiered
screening process with enhanced quality assessment, interagency policy collaboration and
coordination.
METHODS: The South Carolina Act Early Team (SCAET) provided focused collaboration
among leaders representing state agencies, universities, health care systems, private
organizations, and families to improve quality of life for children with ASD. Specific focus
was on implementing policy changes and training to result in earlier identification and
home-based behavioral intervention for young children at risk for ASD.
RESULTS: Policy changes, training, and modified state agency practices were accomplished.
Presumptive eligibility, on the basis of a 2-tiered screening process was implemented by
BabyNet (South Carolina’s Early Intervention Program) in collaboration with the lead
agency for developmental disability services. There was a fivefold increase in children
eligible for early intensive behavioral intervention without waiting for a diagnosis of ASD,
avoiding long waits for diagnostic evaluations. Only 16 children (2.5%) were later found not
to have ASD from a comprehensive evaluation.
CONCLUSIONS: Improvements in early identification and intervention are feasible through
collaborative policy change. The South Carolina Act Early Team and its key stakeholders
committed to improving outcomes for this population used existing tools and methods
in new ways to improve early identification of children with ASD and to make available
evidence-based intervention services. This example should be replicable in other states
with key stakeholders working collaboratively for the benefit of young children with ASD.

WHAT’S KNOWN ON THIS SUBJECT: Early intervention

aDepartment of Pediatrics, Center for Disability Resources, University of South Carolina School of Medicine,
for children with autism spectrum disorder (ASD)
Columbia, South Carolina; bDepartment of Pediatrics, Children’s Hospital, Greenville Health System, Greenville,
South Carolina; cSouth Carolina Department of Disabilities and Special Needs, Columbia, South Carolina; and has the potential to improve their developmental
dDepartment of Pediatrics, Medical University of South Carolina, Charleston, South Carolina trajectory. Difficulty in timely identification and
service provision results in missed opportunities for
Dr Rotholz conceptualized the article, drafted the majority of the manuscript, and reviewed
many children. Improvements are needed to help the
and revised the manuscript; as chair of the team that developed the process for presumptive
growing number of children with ASD.
eligibility in South Carolina, he contributed meaningfully to this process; Dr Kinsman contributed
to conceptualization of the article, developed sections of the article, and reviewed and revised WHAT THIS STUDY ADDS: This article describes a
the article; as a member of the team that developed the process for presumptive eligibility in statewide process that improved early identification
South Carolina, she contributed meaningfully to this process; Dr Lacy codeveloped the process for of young children at risk for ASD and how they
presumptive eligibility for young children at risk for autism spectrum disorder in South Carolina
gained eligibility for early applied behavior analysis
and led the process for its approval by the South Carolina Developmental Disabilities agency;
intervention. Results demonstrate improvements
she reviewed and edited the article; Dr Charles initiated the idea for training of physicians in
advanced screening tools, initiated and organized the first Screening Tool for Autism in Toddlers from a 2-tiered screening system with a low false-
positive rate.

To cite: Rotholz DA, Kinsman AM, Lacy KK, et al. Improving Early Identification
and Intervention for Children at Risk for Autism Spectrum Disorder. Pediatrics.
2017;139(2):e20161061

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PEDIATRICS Volume 139, number 2, February 2017:e20161061 ARTICLE
Prevalence estimates for young Practitioners and state systems implement approaches to improve
children with autism spectrum of care have struggled with these early identification and effective
disorder (ASD) have been steadily issues,6 including delays identifying intervention for young children
rising from 1 in 150 in 2000 to 1 in suspected ASD and referral for at risk for or diagnosed with
68 in surveillance year 2010.1 The evaluations. A strategy implemented ASD. In 2009, the South Carolina
importance of early identification and in many states to address early University Center for Excellence in
intervention for young children with identification comes from the Centers Developmental Disabilities; known
ASD is well established.2,3 for Disease Control and Prevention locally as the Center for Disability
It is estimated that approximately (CDC) “Learn the Signs, Act Early” Resources at the University of South
one-third of children and youth campaign.7,8 However, extended time Carolina School of Medicine (USC),
with special health care needs with often occurs between when concerns Department of Pediatrics formed the
ASD are covered by Medicaid or are first raised, referral, and the
SCAET.
the state-based Children’s Health diagnostic evaluation. As noted by
Insurance Program.4 It has also Marks et al,9 leadership is needed
“across sectors to build capacity The SCAET comprises members
been estimated that intensive with decision-making authority
behavioral intervention costs, in to increase and improve access
to evidence-based practices and from the following: USC, Department
addition to medical costs, can range of Pediatrics (University Center
from $40 000 to $60 000 per year, services that are tailored to child and
family needs.” for Excellence in Developmental
with societal costs of caring for
Disabilities director, board certified
children with ASD estimated at over To address the small number of behavior analyst [BCBA]), South
$9 billion in 2011.5 Therefore, it children under age 3 with or at Carolina Autism Society (executive
is especially noteworthy that the risk for ASD who were receiving director), South Carolina Chapter
Centers for Medicare and Medicaid early intervention services in South of American Academy of Pediatrics
Services (CMS) issued the bulletin Carolina, we (the South Carolina
“Clarification of Medicaid Coverage (MD appointee), South Carolina
Act Early Team [SCAET]) developed
of Services to Children with Autism” Department of Disabilities and
a new policy of “presumptive
in July 2014, providing information Special Needs (DDSN; Associate
eligibility.” Implemented
to states specifically noting the State Director for Policy), Medical
collaboratively by BabyNet and
inclusion of “applied behavior University of South Carolina
the South Carolina Agency for
analysis (ABA) therapy” as a benefit Developmental Disabilities (DD) (MD, Developmental/Behavioral
for those younger than age 21 under services, this policy provides Pediatrics), BabyNet (Part C
Medicaid’s Early Periodic Screening, BabyNet EIBI for children under age Coordinator), Winston’s Wish
Diagnosis, and Treatment provision.6 3 without a diagnosis of ASD on the (private autism-focused foundation,
Medicaid coverage for ABA therapy basis of a 2-tiered screening process. executive director), Greenville
(sometimes described as early Children are determined to be Health System (Director of Pediatric
intensive behavioral intervention eligible under presumptive eligibility Psychology), Family Connection of
[EIBI]) has the potential to vastly if found at risk on the Modified South Carolina (executive director),
broaden the population of children Checklist for Autism in Toddlers South Carolina Department of
with ASD receiving this intervention, (M-CHAT10,11) and the Screening Education (autism specialist), South
especially since CMS stated that Tool for Autism in Toddlers and Carolina Developmental Disabilities
the service may be covered under Young Children (STAT12–14). The Council (executive director), and
Medicaid waivers and Medicaid current investigation describes and University of South Carolina, Special
state plans. The latter option may examines the effectiveness of this Education Program (professor).
provide intervention without policy implementation on access to Since its inception, the SCAET has
waiting lists for services and EIBI services. had membership changes, but the
eliminates the institutional level of leadership, participation, and focus
care requirement existing in states has remained to improve early
providing the service under Medicaid METHODS identification and intervention for
waiver programs. In 2007, the CDC initiated a multiyear young children with and/or at risk
Significant challenges exist in process to promote development for ASD. Subsequent to the CMS
appropriately identifying children of Learn the Signs, Act Early state guidance that ASD services should be
at risk for ASD at an early age and teams. Teams were to create included in Medicaid State Plans the
providing them with effective multidisciplinary statewide groups state Medicaid agency has joined the
early intervention (eg, EIBI). of key stakeholders to develop and group (deputy director).

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2 ROTHOLZ et al
Measures
Modified Checklist for Autism in
Toddlers
The M-CHAT10 is a parent-completed
screening measure. Although the
Positive Predictive Value using the
established cutoff scores is low
for the M-CHAT alone (eg, 0.36
+/− 0.05 for initial screening), it
improves when follow-up questions
are asked.11 However, it has been
suggested that use of an additional
second level screening be used before
implementing a comprehensive ASD
evaluation, particularly in low risk
samples.12

Screening Tool for Autism in Toddlers

and Young Children
The STAT12–14 is a screening measure
administered in a brief (15 to 20 FIGURE 1
minutes) interactive assessment Implementation of presumptive eligibility, 2-tiered screening process and policy in South Carolina.
with children. The STAT is normed
on children ages 24 to 35 months, and other professionals, and (d) When physicians complete the
but extended scoring systems are implementation across 2 state agencies M-CHAT as part of the child’s medical
available for children ages 3 years with collaboration from developmental care, they typically make referrals
and as young as 14 months.13 The evaluation centers (DECs). to DECs for an ASD assessment and
STAT assesses social communication to BabyNet to determine overall
skills and provides a total ASD risk The presumptive eligibility policy eligibility for services. In this
cutoff score. Research has shown requires that a child initially screens instance, a STAT-trained professional
strong concurrent validity with as “at risk” on the M-CHAT. Initial at the DEC administers the STAT.
the Autism Diagnostic Observation screening using the M-CHAT could be
Children who have an at-risk score
Schedule-G and clinical diagnosis14 conducted through multiple channels,
on the STAT are eligible to begin
and that specific training in the STAT including the child’s early intervention
EIBI services provided by BabyNet.
had a positive impact on comfort in provider or physician. In most instances,
If the STAT was performed at the
discussion and ASD diagnosis and the M-CHAT was administered without
DEC, the child is subsequently
diagnostic identification in pediatric follow-up questions.
scheduled for a comprehensive
practices.
evaluation. If not already referred
For children already participating in to a DEC, these children are referred
Eligibility for and Receipt of Services
BabyNet services, Early intervention for a comprehensive diagnostic
The South Carolina BabyNet program providers are required to administer evaluation for ASD through DDSN
state office provided data on children the M-CHAT at 18 and 24 months. and/or a DEC. In both instances,
age 0 to 3 related to presumptive If the child is identified as at risk, the child will continue EIBI services
eligibility, evaluations, diagnosis, and BabyNet policy requires early until they either age out of BabyNet
BabyNet service participation in EIBI. intervention providers to refer the services or are determined not to
child for a STAT administered by a meet criteria for ASD based upon the
Procedures STAT-trained professional either comprehensive diagnostic evaluation.
Procedures for developing and through the DDSN or 1 of 3 DECs
implementing presumptive eligibility (Fig 1). This policy was implemented, Children who do not have an at risk
included the following: (a) policy in part, because early intervention score on the STAT but are receiving
development for 2 state agencies providers may not have the requisite early intervention continue receiving
focused on a new, 2-tiered screening training and experience to administer their services. If the child has been
system, (b) federal regulatory follow-up questions and determine referred to a DEC, a comprehensive
approval, (c) training for medical the need for additional screening. evaluation will be conducted if

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PEDIATRICS Volume 139, number 2, February 2017 3
the specific professional deems it Members of the SCAET organized children age 18 to 36 months eligible
necessary. and hosted training for professionals for and receiving EIBI services.
Across both DDSN and the DECs, the (medical and others) on the STAT13,14 Children in this age range newly
comprehensive diagnostic evaluation on 3 separate occasions in different eligible to receive EIBI services
for ASD includes the Autism Diagnostic areas of South Carolina. All trainings increased from 53 children in 2010
Observation Schedule, Second Edition,15 were conducted by a certified to over 265 children in 2015 (Fig 2).
as well as other ASD-specific measures trainer and faculty member from It is important to note that the annual
as determined by the particular site Vanderbilt University where the figures may underestimate the actual
(eg, Childhood Autism Rating Scale, STAT was developed and where number of children eligible because
Second Edition16), caregiver interview, dissemination efforts are based. The children can stay presumptively
child observation, and completion of training included 2 days of didactic eligible for EIBI services for
Diagnostic and Statistical Manual of instruction, practice, and follow-up consecutive years (eg, ages 2 and 3).
Mental Disorders, Fifth Edition criteria. quality review of initial assessment This could increase those eligible in
For those children evaluated through implementation. The SCAET 2014 through 2015 to a number closer
the DECs, the evaluation also typically maintains the list of the physicians, to the 628 children who received
includes a standardized assessment nurses, psychologists, social presumptive eligibility between 2012
of developmental, behavioral, and workers, and other professionals and 2015. For this reason, a current
adaptive skills. In all instances in who successfully completed the point in time child count was obtained
which a child has been determined training and provided it to the 2 from the BabyNet database (Table 1).
eligible for BabyNet services other state agencies directly involved This count includes all children age 0
than EIBI, determining that the child in providing early interventions to 3 receiving EIBI in September 2015.
does not have ASD will not impact services for children with disabilities. Of the children receiving the service in
eligibility for these other services. August 2015, 267 received eligibility
It is important to note that South through the presumptive eligibility
Policy requires that a STAT be Carolina has a Medicaid Waiver that process, whereas 73 received a formal
completed by professionals who provides EIBI for Medicaid eligible diagnosis of ASD.
(a) successfully completed the children ages 3 to 11 years. The state
SCAET-provided STAT training, legislature also appropriated funds so
(b) have training in standardized that children meeting EIBI eligibility DISCUSSION
assessment, (c) have experience in requirements but not Medicaid Presumptive eligibility has had a
conducting standardized diagnostic eligible could receive the EIBI paid for measureable impact on the number
developmental assessments, and with state funds. With introduction of young children in South Carolina
(d) be enrolled as a DDSN STAT of EIBI services for children under identified and determined eligible
“provider.” These requirements were age 3 on the basis of presumptive for and receiving EIBI services. Use
developed to insure that access to eligibility, the 2 state agencies agreed of presumptive eligibility rather than
services via presumptive eligibility that any child receiving EIBI from a formal diagnosis allows for earlier
would be determined by professionals BabyNet would seamlessly transition access of services. For these children,
with the most appropriate training to the DD agency funded (Medicaid this may mean months if not more
and experience according to the Waiver) services upon reaching than a year of intervention at a
SCAET. Before this policy could be age 3 if they had a diagnosis of ASD. critical time in development. Further,
implemented, approval was required Because the children were referred given the seamless transition to the
from the US Department of Education for a full diagnostic assessment upon Medicaid Waiver at the age of 3, these
because they have authority over receiving presumptive eligibility, it children may be receiving services
expenditure of BabyNet/Part C funds, was typically achievable to have the several years earlier by avoiding the
including those to be used for their evaluation completed by the required waiting list. Although the longitudinal
share of the EIBI costs. age. Therefore, presumptively eligible impact on functional and financial
Upon federal approval received in children receiving EIBI were able to outcome for these children may not
October of 2012, the presumptive bypass the waiting list for EIBI from yet be known, these efforts align with
eligibility process was published and the DD agency. research and policy identifying the
disseminated jointly by the BabyNet importance of early intervention for
and the SC DD agency in South Carolina. young children with ASD.
RESULTS
At that point STAT assessments for
children age 18 to 36 months began Implementation of presumptive Not all children who receive
for those who were found to be at eligibility in South Carolina has been eligibility actually enroll in the
risk on the basis of the M-CHAT. accompanied by large increases in service due to a combination of

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4 ROTHOLZ et al
 Although some might be concerned
about waiting time to receive a STAT
and the services it enables, this has
been addressed by the 26 qualified
assessors and a waiting period that
varies from 20 to 90 days across sites.

Use of an at risk status for eligibility

raises concern that services could
be removed if formal diagnostic
evaluation determines the child does
not meet criteria for ASD. This could
also create distress and confusion for
families who perceived their child
as having ASD but then do not. Steps
taken to reduce the likelihood of a
false-positive for ASD (STAT training
and qualified provider certification)
have limited this outcome. Further,
those administering the STAT inform
FIGURE 2 families that presumptive eligibility
Number of children younger than age 3 determined eligible for ASD services in South Carolina. is not a diagnosis but rather a
determination of need for further
TABLE 1 Point in Time Data on Children Younger Than Age 3 Receiving ASD Services in South Carolina assessment and a means to begin
2015 Current Snapshot of Service Data for Children Under Age 3 (Aug 15, 2015) services while waiting for formal
No. of Children Receiving EIBI Through Part C/BabyNet No. of Children Receiving EIBI Through Part assessment.
via Presumptive Eligibility Status C/BabyNet via ASD Diagnosis
267 73 Implementation of presumptive
eligibility has met with some
family factors and service sector Another issue is that while challenges. The implementation
challenges. Some families choose not presumptive eligibility has been of a screening tool creates risk for
to have the home-based intervention implemented there have been identifying children as not at risk
and others face the challenge of other concurrent efforts to improve when they ultimately would be
finding an available service provider. pediatric practice in South Carolina. diagnosed with ASD. This could
The South Carolina Quality Through create instances where, after a
The increase in children eligible determination of “not at risk,” a
Technology and Innovation in
for EIBI raises questions about formal evaluation is not pursued
Pediatrics project includes emphasis
whether other factors, such as and/or significant distress is
on routine screening, including the
socio-demographic changes, could experienced by families when at
M-CHAT, in the 18 practices involved.
contribute to this finding. Perhaps subsequent formal assessment
Although this might initially seem
the most relevant data are those on a diagnosis is made. Families
ASD prevalence published by the an alternate explanation for the
were counseled that the STAT is
CDC, which reported, in 201617 that improvements reported in this study,
a screening tool and that formal
South Carolina had an ASD prevalence it is not. Instead it complemented
assessment is still recommended,
rate of 12.4 per 1000 children age the presumptive eligibility process.
particularly as other diagnoses and
8 in 2012 compared with a national Recalling that the SCAET required a
intervention needs may be identified
average of 14.6. The CDC also reported 2-tiered screening process to access
through formal evaluation. STAT
that in 200818 South Carolina had an EIBI without an ASD diagnosis,
assessors were highly trained
ASD prevalence rate of 11.1 per 1000 increased use of the M-CHAT alone
and experienced and often able to
compared with a national rate of 11.3. would not have an impact on the
clinically assess whether concerns
With increases in ASD prevalence in results. Only through subsequent remained and a formal evaluation
South Carolina smaller than national use of the STAT, by a professional was needed.
increases, this does not provide an who received SCAET-sponsored
alternative explanation for the fivefold training and became an “approved The determination of not at risk
increase in children identified at risk STAT provider,” were children made could also create the perception
for ASD reported. presumptively eligible for EIBI. that assessment or intervention for

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PEDIATRICS Volume 139, number 2, February 2017 5
other developmental-behavioral ABA providers (BCBAs) and the direct longitudinal outcomes for these
conditions is not necessary. In some implementation staff they supervise children, the effectiveness of the
instances, other factors could account (line therapists). The state DD agency South Carolina policy of presumptive
for the at risk determination. Steps contracts with USC for coursework eligibility demonstrates a method
were taken to ensure that children required by the Behavior Analyst for early identification and
received appropriate services Certification Board with classes implementation of services for young
whether they were determined offered to participants free of charge children with ASD. It also speaks to
not at risk or at risk. For children in exchange for a 2-year commitment the impact that collaborative policy
already receiving Early Intervention to provide services to state DD agency change by key stakeholders can have
services, results of the STAT did service recipients. To date, 5 cohorts on the lives of children with ASD
not alter eligibility or receipt of of trainees have been implemented and their families. The use of readily
other services provided by BabyNet. with an average enrollment of 15 to available tools and training allows
For children not already receiving 20. To complement this effort, the for implementation and suggests that
Early Intervention services or other state DD agency identified a group this strategy would be feasible for
therapies, a referral to BabyNet for a of BCBAs willing to provide the other states.
STAT included eligibility assessment required supervision hours to course
for other BabyNet services. For participants. ACKNOWLEDGMENTS
children referred to the DECs, a
Challenges in recruiting, training, Thanks to the entire South Carolina
comprehensive developmental-
and retaining service provider staff Act Early Team, current and former
behavioral assessment was typically
who treat young children with ASD members, for their essential
completed to assure determination of
are noteworthy. Although the issue is contributions to the team effort
a comprehensive profile of the child.
not unique to South Carolina, we are reflected in this article that have
We found during formal evaluation fortunate that (a) the state legislature improved early identification and
that some families opted not to has increased funding, including the intervention for young children with
pursue EIBI before the formal pay rate for early interventionists, and at risk for ASD in South Carolina.
evaluation, in part because the child (b) the DD agency has funded
may later not be diagnosed with several initiatives to recruit and
ASD. In some instances, this meant train interventionists, and (c) parent
that families were not able to access organizations are collaborating in the
services until after age 3, delaying
ABBREVIATIONS
recruitment, training, and retention
services due to the Medicaid waiver of ASD professionals. ABA: applied behavior analysis
waiting list. This suggests the need ASD: autism spectrum disorder
for more effective communication The state DD agency also contracted BCBA: board certified behavior
with families about pursuing EIBI for development of recruitment analyst
before a formal diagnosis. materials for use at relevant CDC: Centers for Disease Control
professional conferences nationally and Prevention
Some families encountered difficulties and with a recruitment company CMS: Centers for Medicare and
securing services due to limited to create a pool of potential line Medicaid Services
availability of EIBI providers. This therapists for behavioral services DD: developmental disabilities
points to the need to increase professionals and provider DDSN: Department of Disabilities
availability of EIBI/ABA providers. agencies. Additionally, the state DD and Special Needs
Several efforts were implemented to agency collaborates with the USC DEC: Developmental Evaluation
address this issue. South Carolina was psychology department to identify Center
among the first states to implement students interested in becoming EIBI: early intensive behavioral
a Medicaid Waiver for children with line therapists. Finally, the state intervention
pervasive developmental disorders DD agency amended the EIBI/ABA M-CHAT: Modified Checklist for
in early 2007. That same year the service program to allow families Autism in Toddlers
South Carolina legislature approved to recruit and hire their own line SCAET: South Carolina Act Early
covering services for children therapists. Team
with ASD under certain private
STAT: Screening Tool for Autism
health insurance plans which was
CONCLUSIONS in Toddlers and Young
associated with an increased demand
Children
for services. Additionally, the state Although future research is needed
USC: University of South Carolina
DD agency implemented several to determine the impact of
School of Medicine
initiatives to address the supply of presumptive eligibility on

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6 ROTHOLZ et al
and Young Children training, and contributed meaningfully to development of presumptive eligibility for young children at risk for autism spectrum disorder in
South Carolina; and all authors approved the final manuscript as submitted.
DOI: 10.1542/peds.2016-1061
Accepted for publication Nov 4, 2016
Address correspondence to David A. Rotholz, PhD, Center for Disability Resources, Department of Pediatrics, University of South Carolina School of Medicine,
Columbia, SC 29208. E-mail: david.rotholz@uscmed.sc.edu
PEDIATRICS (ISSN Numbers: Print, 0031-4005; Online, 1098-4275).
Copyright © 2017 by the American Academy of Pediatrics
FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.
FUNDING: Partial, initial funding was provided by the Association for Maternal and Child Health Programs, State System grant.
POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.

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PEDIATRICS Volume 139, number 2, February 2017 7
Improving Early Identification and Intervention for Children at Risk for Autism
Spectrum Disorder
David A. Rotholz, Anne M. Kinsman, Kathi K. Lacy and Jane Charles
Pediatrics 2017;139;
DOI: 10.1542/peds.2016-1061 originally published online January 12, 2017;

Updated Information & including high resolution figures, can be found at:
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References This article cites 12 articles, 2 of which you can access for free at:
http://pediatrics.aappublications.org/content/139/2/e20161061#BIBL
Subspecialty Collections This article, along with others on similar topics, appears in the
following collection(s):
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http://www.aappublications.org/cgi/collection/development:behavior
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Improving Early Identification and Intervention for Children at Risk for Autism
Spectrum Disorder
David A. Rotholz, Anne M. Kinsman, Kathi K. Lacy and Jane Charles
Pediatrics 2017;139;
DOI: 10.1542/peds.2016-1061 originally published online January 12, 2017;

The online version of this article, along with updated information and services, is
located on the World Wide Web at:
http://pediatrics.aappublications.org/content/139/2/e20161061

Pediatrics is the official journal of the American Academy of Pediatrics. A monthly publication, it
has been published continuously since 1948. Pediatrics is owned, published, and trademarked by
the American Academy of Pediatrics, 141 Northwest Point Boulevard, Elk Grove Village, Illinois,
60007. Copyright © 2017 by the American Academy of Pediatrics. All rights reserved. Print ISSN:
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