Matern Child Health J
DOI 10.1007/s10995-016-2113-y
Part C Early Intervention Enrollment in Low Birth Weight
Infants At-Risk for Developmental Delays
Kristi L. Atkins1 • Susanne W. Duvall1 • Jill K. Dolata1 • Patricia M. Blasco1,2
Sage N. Saxton1
Ó Springer Science+Business Media New York 2016
Abstract Objectives To investigate enrollment patterns in
Part C Early Intervention (EI) for low birth weight (LBW)
infants (B2500 g). A secondary aim is to characterize
LBW infants that are not enrolled in EI, but would qualify
by meeting criteria for a condition associated with a ‘‘high-
probability’’ for developmental delays (i.e., Intraventricular
Hemorrhage grade III or higher, Apgar score of B5 at
5 min, and/or birth weight of B1200 g). Methods Data
were gathered from 165 LBW infants participating in a
high-risk infant follow-up program. Developmental
assessment was completed. Basic demographic information
and data regarding enrollment in EI were collected via
parent questionnaire. Medical variables were extracted
from each infant’s electronic medical record. Results
71.5 % of LBW infants were not enrolled in EI. Factors
influencing probability of EI enrollment included birth
weight, gestational age, developmental test scores, and
insurance status. Of the 107 infants living in Oregon who
were not enrolled in EI, 42.1 % would qualify for services
due to an early medical condition identified in Oregon as a
condition associated with a ‘‘high-probability’’ for devel-
opmental delays. Conclusions Less than one third of LBW
infants were enrolled in EI by their first visit to a high-risk
infant follow-up program. Those infants demonstrating
developmental delays and public insurance were more
likely to be enrolled. The majority of infants who have
& Kristi L. Atkins
atkinskr@ohsu.edu
1 prematurity are associated with a higher probability of
School of Medicine, Institute on Development & Disability,
Oregon Health and Science University, 707 SW Gaines St.,
Portland, OR 97239, USA
2
The Research Institute, Western Oregon University, 345 N.
Monmouth Ave., Monmouth, OR 97361, USA
•
readily identifiable medical risk factors that qualify them
for EI were not enrolled. This study was limited by the
constraints implicated by using a clinical sample.
Keywords High-risk infant
NICU
Health services
utilization
Significance
Research indicates underutilization of Part C Early Inter-
vention (EI) for low birth weight (LBW) infants nation-
wide. Additionally, despite being at elevated risk for
experiencing developmental delays, many of these high-
risk infants have late entry into EI programs. This study
found that the majority of LBW infants (71.5 %) were not
enrolled by their first visit to a high-risk infant follow up
clinic. Those with lower scores on developmental testing
and public insurance were most likely to be enrolled. Of
those who qualify but were not enrolled, 88.4 % would
qualify based on a single condition and 11.6 % based on
multiple at-risk conditions.
Introduction
According to the Centers for Disease Control and
Prevention, data from 2014 indicated 8.00 % of births
nationally were low birth weight (LBW, B2500 g;
Hamilton et al. 2015). It is well-established that LBW and
major medical conditions resulting in developmental
delays (e.g., Cerebral Palsy). Research indicates that even
those LBW infants without major neurodevelopmental
disability are at increased risk for developmental delays
123

and subtle difficulties with linguistic abilities and executive
functioning skills; these difficulties have been demon-
strated early on and can persist into school-aged years
(Barre et al. 2011; Duvall et al. 2015; Foster-Cohen et al.
2007; Guarini et al. 2009; Hutchinson et al. 2013). Addi-
tionally, evidence suggests differences in preverbal com-
munication and engagement skills between LBW/
premature infants and full term infants are identifiable as
early as 6 months of age (De Schuymer et al. 2011).
In general, Part C Early Intervention (EI) programs for
children who have or are deemed at-risk for developmental
delays have been shown to improve outcomes across areas
of development, including communication, social-emo-
tional, and cognitive skills (Bailey et al. 2005; Guralnick
1997; Hebbeler et al. 2007). Furthermore, research indi-
cates the majority of families who participate in EI services
report perceived benefit from their participation and report
feeling competent in caring for their children, advocating
for services, and accessing additional supports (Bailey
et al. 2005; Hebbeler et al. 2007). However, there is some
concern regarding how long these effects persist. Research
on efficacy of early intervention for low birth weight babies
revealed improved cognitive outcomes for all infants in the
intervention group, but noted that intervention was more
efficacious for heavier birth weight infants (i.e.,
2001–2500 g) than lighter birth weight infants (i.e.,
B2000 g; Gross et al. 1997). Follow up data taken on the
same group of LBW infants at 8 years of age revealed
heavier birth weight children from the intervention group
presented with modestly higher cognitive, math achieve-
ment, and receptive vocabulary scores, but the effects were
diminished as compared to those seen at 3 years of age
(McCarton et al. 1997; McCormick et al. 1998). Further
analysis of this sample revealed that infants with higher
participation in the early intervention program had larger
and longer lasting intervention effects, though again the
effects were larger at 3 years of age than at 8 years of age
(Hill et al. 2003).
Despite evidence that LBW and prematurity place
children at increased risk for experiencing developmental
delays, the National Early Intervention Longitudinal Study
(NEILS) indicated delays in access to and underutilization
of EI services by children born LBW. They concluded
children born LBW are inconsistently served across the
United States and that of children born very low birth
weight (VLBW) receiving EI services, 30 % had late entry
into the program (i.e., after 12 months of age; Hebbeler
et al. 2007). Though the NEILS data are comprehensive,
they are somewhat dated, reinforcing the need for more
contemporary information on EI enrollment in LBW chil-
dren. Additional localized studies utilizing linked data
from hospital records and EI referral records indicated
enrollment in EI for LBW children varies widely by state
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Matern Child Health J
(Barfield et al. 2008; Wang et al. 2009). While these
studies provided rich information regarding enrollment of
LBW children in EI, there is limited information available
regarding high-risk infants who would likely qualify for EI
but are not enrolled. One study utilizing data from across
California’s neonatal follow-up programs indicated that at
their first visit to a follow-up program only 33 % of infants
characterized as having a high concern for long term
developmental delays were enrolled in their local EI pro-
gram. Of those same infants characterized as having a high
concern for long term developmental delays, 38 % were
referred to other therapies, 20 % were receiving both EI
and other therapies, and 34 % had received no referrals for
services/supports (Tang et al. 2012). Given LBW infants
are easily identified as an at-risk population at birth, further
characterization of this population is warranted to identify
barriers to accessing EI services following hospital dis-
charge and to better characterize those infants who are not
enrolled in EI services but would likely qualify for them.
There is currently no national standard regarding EI
enrollment for LBW infants or for EI eligibility criteria in
general. At present, each state is left to define its own
eligibility criteria and to determine if the state will serve
children deemed at-risk, or wait to see if developmental
delays emerge (Shackelford 2006). The State of Oregon
offers EI services to children meeting established criteria
for developmental delays (i.e., 1.5 standard deviations
below the mean in two domains, or more than 2 standard
deviations below the mean in one domain) and those who
have one of a list of established medical conditions (e.g.,
autism spectrum disorder, visual impairment, orthopedic
impairment, deaf/blindness). Oregon also serves children
through EI with ‘‘conditions associated with a high prob-
ability of significant developmental delay’’ without regard
for demonstrated developmental delay on standardized
measures (OAR 166-500-0020). Although there are several
broadly defined classes of ‘‘conditions,’’ this study will
focus on three qualifying conditions that are readily iden-
tifiable at birth and prevalent among premature infants (i.e.,
Intraventricular Hemorrhage grade III or higher, Apgar
score of B5 at 5 min, and/or birth weight of B1200 g).
This study was designed to investigate the utilization of
EI services by LBW infants at their first visit to a high-risk
infant follow-up program, as well as factors that may
predict enrollment in EI prior to 12 months of age. A
secondary aim is to explore and describe LBW infants who
are not enrolled in EI but would qualify for EI by meeting
criteria for a condition associated with a ‘‘high-probabil-
ity’’ for developmental delays, as defined by the Oregon EI
eligibility requirements (i.e., Intraventricular Hemorrhage
grade III or higher, Apgar score B5 at 5 min, and/or birth
weight of B1200 g). Given that the high-risk infant follow
up program is not associated with the local EI program
Matern Child Health J

(other than making referrals to the program, if indicated demographic data were extracted from each child’s elec-
following the clinical evaluation), this study focuses on the tronic medical record (Table 1).
three medical criteria related to prematurity that would
make a portion of LBW infants qualify for EI without Statistical Analyses
regard to developmental status at evaluation, as these are
the infants easiest to identify as at-risk upon discharge from Descriptive statistics were used to determine the percent-
the NICU. age of the 165 LBW infants enrolled in EI and to charac-
terize the sample. Logistic regression analysis was
performed to determine which factors were related to the
Methods likelihood of being enrolled in EI. One way, between
subjects analysis of variance was used to investigate sig-
Participants nificant differences between the LBW infants enrolled in
EI versus those LBW infants not enrolled in EI.
The clinical sample included 165 infants born LBW
(B 2500 g) between the years of 2009 to 2013, who had
their first visit to a high-risk infant follow-up program
Results
within their first year of life (chronological age
B12 months). Children whose first visit to the high-risk
Enrollment in EI and Predictive Factors
infant follow up program occurred after 12 months of age
were not included in the study. Referrals to the program
The majority of infants in our sample were not enrolled in
came primarily through a Level III Neonatal Intensive Care
EI by 12 months of age (n = 118, 72 %). As seen in
Unit (NICU) in a metropolitan hospital, although some
Table 2, significant differences were found between infants
infants were referred by community primary care providers.
enrolled in EI and infants not enrolled in EI in all areas.
The study utilized data from a clinical dataset (Blasco and
Infants enrolled in EI had more severe medical risk factors
Saxton 2009), was approved by the organization’s Institu-
and lower developmental scores, including: lower birth-
tional Review Board (IRB), and was completed in accor-
weight, younger gestational age, greater length of stay in
dance with prevailing ethical standards. The metropolitan
the NICU, lower Bayley Cognitive Composite score, lower
hospital where the clinical data were collected provides a
Bayley Language Composite score, and lower Bayley
notice upon registration to all individuals who receive care
Motor Composite score (Table 2). The group receiving EI
that their health information may be used for research, if
services was also older and more likely to have public
approved through the IRB. Exclusionary criteria included
insurance. No difference in Apgar scores at 5 min or
severe visual or hearing impairment that would impact the
prevalence of IVH grade III or higher was noted between
validity of developmental testing. Demographic informa-
groups. As shown in Fig. 1, even among those children
tion about the sample is available in Table 1.
born extremely low birthweight (i.e. B1000 g), only 39 %
were enrolled in EI.
Data Collection and Measures
Using logistic regression of birthweight, days hospitalized
in the NICU, insurance type, and Bayley Cognitive, Language
The Bayley Scales of Infant and Toddler Development-3rd
and Motor composites, the likelihood of participating in EI
Edition (BSID-III) was administered to each infant as part
was found to be related to the Bayley Motor Composite Score
of their clinic visit. As described in the administration
and total number of days in the NICU. This overall model was
manual, age at testing was adjusted for gestational age to
significant (Chi squared of 16.286, p \ .001) with a
account for prematurity (Bayley 2005). The following
Nagelkerke R2 value of 0.143 [days in the NICU B = -0.01,
scaled scores (mean of 10 and standard deviation of 3)
Exp (B) = .990 and Bayley Motor Composite B = 0.029,
were obtained: receptive language, expressive language,
Exp (B) = 1.029]. When chronological age was added to the
fine motor, and gross motor. The BSID-III scaled scores
regression the model remained the same.
yield composite scores, which have a mean of 100 and a
standard deviation of 15: Cognitive Composite score
(cognitive scaled score), Language Composite score (re- EI Enrollment in LBW Infants Who Would Qualify
ceptive and expressive scaled scores), and Motor Com- in Oregon with an At-Risk Category
posite (fine and gross motor scaled scores). Basic
demographic information and data regarding enrollment in In the subsample of infants from Oregon (n = 146), 40
EI were collected via parent questionnaire at the time of the infants were enrolled in EI (27 %). Of the infants in Ore-
visit. Limited medical variables and additional gon who were not enrolled in EI (n = 106), 40.6 % would

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 Matern Child Health J

Table 1 Characteristics of low

n M/Count Minimum Maximum SD
birth weight children seen in the
high-risk infant follow-up Gender (male) 165 98 (59 %) – – –
program
Birthweight (g) 165 1475 (36.4 % \ 1200 g) 580 2500 513
Gestational age (months) 165 30.66 23.43 41.00 3.47
Primary language (English) 142 119 (72 %) – – –
Chronological age 165 7.00 1.23 11.97 2.03
Adjusted age 165 4.78 1.23 11.80 1.86
Insurance status (public) 165 89 (54 %) – – –
Total surgeries in NICU 164 0.51 0 10 1.37
Days on respiratory support 163 22.13 0 159 32.04
Days in NICU, total 157 51.82 2 224 37.24
IVH, grade III or higher 165 9 (5 %) – – –
Apgar score at 5 min 159 7.10 (21.4 % Apgar B 5) 1 9 1.90
BSID-III Cognitive Composite 164 97.19 55.00 130.00 14.86
BSID-III Language Composite 165 96.52 50.00 132.00 13.12
BSID-III Motor Composite 164 95.46 46.00 136.00 18.27
BSID-III Receptive Scaled Score 165 9.24 2.00 16.00 2.58
BSID-III Expressive Scaled Score 165 9.61 2.00 15.00 2.25
BSID-III Fine Motor Scaled Score 164 9.57 1.00 18.00 3.28
BSID-III Gross Motor Scaled 162 8.98 1.00 16.00 3.44
Score
Count data are presented as n (%) unless otherwise indicated
BSID-III Bayley Scales of Infant and Toddler Development-3rd Edition, NICU Neonatal Intensive Care
Unit, IVH Intraventricular Hemorrhage

Table 2 Summary for children receiving and not receiving Early Intervention services
Receiving EI (n = 47) Not receiving EI (n = 118) F p
M SD M SD

Birthweight (g) 1321 471.82 1536 517.73 6.12 .014*

Gestational age 29.60 3.47 31.08 3.39 6.36 .013*
Total days in NICU 66.59 42.85 46.07 33.29 10.18 .002**
BSID-III Cognitive Composite 90.94 13.14 99.70 14.82 12.49 .001***
BSID-III Language Composite 92.13 11.25 98.26 13.44 7.65 .006**
BSID-III Motor Composite 87.04 18.66 98.85 17.05 15.21 .001***
Chronological age 7.68 2.08 6.72 1.94 7.904 .006**
Apgar score at 5 min 6.73 1.94 7.25 1.79 2.374 .125
Insurance (public) n = 32 – n = 57 – V2 = 5.29 .021*
IVH, grade III or higher n=5 – n=4 – V2 = 3.42 .076
BSID-III Bayley Scales of Infant and Toddler Development-3rd Edition, IVH Intraventricular Hemorrhage
Asterisks denote significance levels, * p = .05, ** p = .01, *** p B .00

qualify for EI services based on having an at-risk condition.
As would be expected, within this group of children not
attending EI, children who would qualify for services based
on having an at-risk condition had lower birthweight and
gestational age and a higher number of days hospitalized.
As seen in Table 3, lower Bayley Language Composite
scores were seen in the group that would qualify for EI. Of
the 43 infants who would qualify for EI based on having an
at-risk condition but who were not enrolled, 88.4 % would
qualify based on a single at-risk condition and 11.6 %
would qualify based on multiple at-risk conditions.
Discussion
Despite the well-established risks infants born LBW face,
only 28 % of infants in our clinical sample were enrolled in
EI by 12 months of age. In general, those enrolled in EI

123
Matern Child Health J

Fig. 1 Early intervention 0.9

enrollment by birth weight n = 57
category. This figure illustrates 0.8
the percentage of children
enrolled and not enrolled in 0.7 n = 38
early intervention by birth

Percentage per group

n = 23
weight category 0.6

0.5

0.4 n = 15
n = 18
0.3
n = 14
0.2

0.1

0
- -
Enrolled Not Enrolled

Table 3 ANOVA summary for

Qualify EI (n = 43) Not qualify EI (n = 63) F p
children from Oregon who are
not enrolled in Early M SD M SD
Intervention services (n = 106)
based on who would qualify and Birthweight (g) 1241.81 515.36 1734.91 394.22 31.083 .001***
not qualify for Early Gestational age 29.32 3.45 32.18 2.56 23.984 .001***
Intervention services based on
Total days in NICU 61.95 34.24 31.00 26.76 21.178 .001***
medical factors alone
BSID-III Cognitive Composite 96.63 16.89 101.29 13.94 2.385 .126
BSID-III Language Composite 94.88 15.73 101.16 11.20 5.760 .018*
BSID-III Motor Composite 96.00 17.98 100.28 17.16 1.513 .221
Asterisks denote significance levels, * p = .05; ** p = .01, *** p B .00
BSID-III Bayley Scales of Infant and Toddler Development-3rd Edition, NICU Neonatal Intensive Care
Unit

had lower scores on nearly all aspects of developmental
testing and more medical severity indicators, which is
consistent with previous research (Litt and Perrin 2014;
Tang et al. 2012). Scores in the motor domain on devel-
opmental testing and days spent in the NICU were the
strongest predictors of EI enrollment before 12 months of
age. This may indicate that LBW babies who are already
demonstrating early delays and those with a more medi-
cally complicated course necessitating longer NICU stays
may be more likely to elicit concerns that lead to timely
enrollment in EI. Similarly, given that on average the LBW
children who were not receiving EI had heavier birth
weights and scored higher on developmental testing, par-
ents and providers may not have seen the need for EI
services. The fact that the Bayley Motor Composite Score
emerged as a predictive factor of EI enrollment may sug-
gest early motor skills are especially vulnerable in this
sample; or this may be related to the relative ease of
identifying early motor milestone delays for parents and
practitioners compared to linguistic and cognitive differ-
ences which may have a more subtle presentation and be
more difficult to identify. Similarly, a longer and more
protracted NICU stay may be a clearer indicator of future
developmental delay to medical personnel, which may
facilitate earlier referrals for EI services.
Information regarding family social economic status
was not available; however, public insurance may be
thought of as related to social economic status and we
found that infants with public insurance were enrolled in EI
at higher rates than infants with private insurance. This
finding was consistent with previous studies showing that
both EI enrollment and EI referral rates were higher in
families with public insurance (Tang et al. 2012; Wang
et al. 2009). This a likely a multifaceted issue as socioe-
conomic status may be related to medical risk factors,
which in turn might impact child development and EI
enrollment. Further research is needed to explore these
complex issues. Indeed, when completing secondary (post

123

hoc) analyses comparing developmental scores between
those with public insurance and private insurance signifi-
cantly lower scores were seen on Bayley Cognitive, Lan-
guage, and Motor Composites.
There has been some question raised regarding whether
the infants not enrolled in EI were being served through
other means, such as enrollment in private therapies or
other, non-Part C services. However, in our sample, only
12 infants (7 %) were enrolled in private services but not in
EI and of those infants only one would qualify for EI in
Oregon with a condition that was associated with a high
probability of experiencing developmental delays. Thus, it
seems that many infants who may benefit from EI are not
receiving services, even when qualification for these ser-
vices is readily identifiable in the perinatal period.
The fact that the majority of infants born LBW in
Oregon that met criteria for an ‘‘at-risk’’ condition eligi-
bility were not enrolled in EI by their first high risk follow-
up visit is consistent with national findings, indicating that
only a small percentage of children who are likely candi-
dates for EI are being served (Blasco et al. 2012; Rosen-
berg et al. 2013). Although several studies have indicated
that LBW children are likely underserved in EI programs
(Hebbeler et al. 2007; Litt and Perrin 2014), limited
information has been gathered on the children who remain
underserved. Our results suggest the earliest referral
opportunity (i.e., prior to discharge from the NICU) is often
missed in this vulnerable population of infants who would
qualify for services without having to wait to manifest
developmental delays.
Our study was limited by the constraints implicated by
the clinical nature of the data collection; only infants who
were seen in the high-risk follow-up clinic were evaluated
and included in this study. Although all infants seen in the
NICU from the present study were referred for follow-up
services (i.e., developmental evaluation) we do not have
information about the families who did not return for fol-
low-up care, nor do we have information on what per-
centage of infants referred to the high-risk infant follow up
program from the NICU participated in the program. Pre-
vious research indicates that maternal factors such as single
parenting, distance from the follow-up care clinic, and
worry about maternal drug/alcohol use negatively affected
the likelihood of participating in a follow up program
(Ballantyne et al. 2013). Additionally, given the young age
of the children in this sample and nature of this clinical
visit, only early language skills were able to be assessed
and extensive social-emotional/behavioral skills were not
assessed. Similarly, as medical history was collected via
chart review, some medical variables were not available for
all infants (see Table 1 for missing data). Additionally, this
study focused on infants in the Pacific Northwest, which
may represent regional factors; however, we believe the
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Matern Child Health J
information will be useful to pediatric providers serving
LBW infants nationally. Replication of this study in other
states would be helpful in elucidating this issue. Future
studies may benefit from the inclusion of additional med-
ical variables and further information regarding the time
course and details surrounding EI initiation (e.g., when was
the child first referred, was the child found to qualify, were
EI services initiated). Longitudinal follow-up regarding
developmental and social-emotional outcomes for infants
born LBW would also be informative, especially as related
to EI enrollment and service provision.
Given the evidence indicating LBW infants are at
increased risk for experiencing developmental delays, more
research is needed to better understand the current patterns
of health care utilization and intervention enrollment for
LBW infants and their families. This should include
examining referral rates to EI from the NICU, high-risk
infant follow-up programs and primary care offices, as well
as rates of participation in high-risk infant follow-up pro-
grams nationally. Additionally, it will be important to
better characterize EI referral outcomes, as previous studies
have suggested there are many barriers to successful EI
enrollment (Jimenez et al. 2012; Little et al. 2015; Wil-
liams et al. 2013). Ultimately, identification of breakdowns
along the course of follow-up for LBW infants will allow
for better characterization of these high-risk infants who
remain unserved and support timely referrals and enroll-
ment in appropriate services.
Compliance with Ethical Standards
Conflict of interest The authors declare that they have no conflict of
interest.
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