Early Intervention Services for Young

Children with Cerebral Palsy

Alyssa LaForme Fiss and Lynn Jeffries

Contents
Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2
Goals and Environment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4
Body Function and Structure, Impact on Activity, and Participation in Activity . . . . . . . 4
Personal Factors . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4
Environment Factors . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6
Technique . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7
Evaluation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7
Interventions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11
Teaming Models . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12
Evidence of Effectiveness . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13
Cases . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14
Cross-References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 16
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 16

Abstract identification and intervention of problems to

Early intervention services consist of services minimize developmental delays, reduce the
designed to meet the developmental needs of development of secondary impairments, and
children from birth to 5 years of age and their promote family competence in caring for their
families. Services are individualized to the child. The use of family-centered care and pro-
child and family needs and focus on early vision of services in the natural environments
are key components of early intervention ser-
vices. Evaluation using collaborative models,
A. L. Fiss (*) such as arena assessments, with family
Department of Physical Therapy involvement, is used to determine family pri-
Mercer University, Atlanta, GA, USA orities for services. Intervention is generally
e-mail: fiss_al@mercer.edu provided using interdisciplinary or transdisci-
L. Jeffries plinary service delivery models and empha-
Department of Rehabilitation Sciences sizes coaching of families to facilitate their
University of Oklahoma Health Sciences Center,
Oklahoma City, OK, USA ability to meet the needs of their child.
e-mail: Lynn-Jeffries@ouhsc.edu Research has generally supported the use of

# Springer Nature Switzerland AG 2018 1

F. Miller et al. (eds.), Cerebral Palsy,
https://doi.org/10.1007/978-3-319-50592-3_153-1
2 A. L. Fiss and L. Jeffries
early intervention to facilitate motor and cog-
nitive development for infants with or at risk
for cerebral palsy (CP); however, long-term
outcomes of intervention have not been
established.
Keywords
Cerebral palsy · Infants · Toddlers · Early
intervention · Family-centered care
Introduction
Cerebral palsy (CP) describes disorders of the
development of movement and posture that
occur as the result of disturbances in the fetal or
infant brain (Rosenbaum et al. 2007). Children
with CP typically present with developmental
delays and the early onset of impairments.
Because of this, children with CP, or who are at
risk for CP, are typically referred for early inter-
vention (EI) services. EI services consist of indi-
vidualized, multidisciplinary services provided to
children from birth to 5 years of age and their
families that focus on early identification and
intervention of problems to minimize develop-
mental delays, reduce the development of second-
ary impairments, and promote family competence
in caring for their child (Shonkoff and Meisels
2000; Kleinart and Effgen 2013). Services for
children with CP may focus on developmental,
educational, and/or therapeutic outcomes
(Shonkoff and Meisels 2000) and often include
collaborative intervention planning from multiple
disciplines such as occupational therapy, physical
therapy, speech language pathology, and early
childhood education. EI services should be indi-
vidualized to the child and family needs, focusing
on capacity building of the family to empower
them to support their child’s development.
EI can be classified broadly as services pro-
vided to children under 5 years of age to meet their
specific developmental needs. These services are
typically provided through outpatient clinics or
home health-care programs through medical
insurance coverage, educational services, or pub-
lic health programs. More specifically, EI typi-
cally refers to services provided to children
under 3 years of age under a US federal mandate,
the Individuals with Disabilities Education
Improvement Act (IDEA) (IDEA 2004). IDEA
provides for a free, appropriate public education
that emphasizes special education and related ser-
vices to all children regardless of disability (IDEA
2004). EI services for children birth to 3 years of
age are included under IDEA, Part C, and are
defined as services “designed to meet the devel-
opmental needs of an infant or toddler with a
disability, as identified by the individualized fam-
ily services plan team, in 1 or more of the follow-
ing areas: (i) physical development, (ii) cognitive
development, (iii) communication development,
(iv) social or emotional development, or
(v) adaptive development” (IDEA 2004, 20 U.S.
C 1432 § 632). These services are provided by
qualified personnel to address an “urgent and sub-
stantial need
1. To enhance the development of infants and
toddlers with disabilities, to minimize their
potential for developmental delay, and to rec-
ognize the significant brain development that
occurs during a child’s first 3 years of life.
2. To reduce the educational costs to our society,
including our nation’s schools, by minimizing
the need for special education and related ser-
vices after infants and toddlers with disabilities
reach school age.
3. To maximize the potential for individuals with
disabilities to live independently in society.
4. To enhance the capacity of families to meet the
special needs of their infants and toddlers with
disabilities.
5. To enhance the capacity of state and local
agencies and service providers to identify,
evaluate, and meet the needs of all children,
particularly minority, low-income, inner city,
and rural children and infants and toddlers in
foster care” (IDEA 2004, 20 U.S.C.1431§631.
To qualify for EI services under IDEA, chil-
dren with CP must meet the required definition as
a child under 3 years of age who
1. “is experiencing developmental delays, as
measured by appropriate diagnostic
Early Intervention Services for Young Children with Cerebral Palsy
instruments and procedures in 1 or more areas
of cognitive development, physical develop-
ment, communication development, social or
emotional development, or adaptive develop-
ment; or
2. has a diagnosed physical or mental condition
that has a high probability or resulting in devel-
opmental delay; and,
3. may also include, at a State’s discretion –,
(a) at-risk infants and toddlers” (IDEA 2004,
20 U.S.C 1432 § 631).
IDEA provides states with flexibility in deter-
mining how EI programs are structured and how
services are provided and the specific eligibility
criteria for EI service provision within the general
guidelines of the definitions above. These charac-
teristics of EI vary considerably from state to
state. Careful consideration of state differences
in EI requirements is essential for EI providers to
ensure compliance with state and national man-
dates. For the purposes of this chapter, we will
focus primarily on EI services that follow the
IDEA mandates.
EI programs and providers consider family-
centered care best practice and essential in the
provision of EI services. Family-centered care
encompasses how service providers interact with
and involve the child and family in all aspects of
care (Dunst and Trivette 2009). All members of
the family, not just the child, are recipients of EI
services, meaning the family’s strengths, needs,
and priorities are considered to be as important as
the child’s. The foundation of family-centered
care is the belief that the family plays a central
role in the child’s life and must be involved in the
child’s care to promote optimal development.
Families may present to EI with a varied knowl-
edge and skill to support the development of their
children. With appropriate resources and support,
families can learn the best methods to engage with
and enhance the overall development of their chil-
dren (OSEP 2008). Many definitions of family-
centered care exist (American Academy of
3
Pediatrics 2012; King and Chiarello 2014; Mater-
nal Child and Health Bureau 2005); however, the
common threads include (Allen et al. 1997)
respect for the child and family, (American Acad-
emy of Pediatrics and Committee on Hospital
Care and Institute of Patient – and Family-
Centered Care 2012) belief in the family’s abilities
to support their child, (Bailey et al. 2006) respon-
siveness to the family’s priorities and choices, and
(Benzies et al. 2013) a collaborative family-
provider partnership (Photograph 1).
Collaboration is a hallmark of family-centered
care and brings everyone’s thoughts, ideas, and
impressions together to coordinate the assessment
and plan for services. When providers embrace a
family-centered care approach, the focus shifts
from a deficit approach to a strength-based
approach considering the family as a whole. This
strength-based, capacity-building model focuses
on child and family strengths and on providing
opportunities for families to use their existing
abilities and to develop new skills. The priorities
of the child and family and their resources help
define the direction of the service plan and goals,
and the primary role of the service provider is to
support and enhance the capacity of the family as
a whole (OSEP 2008). Family choice and control
are priorities to build capacity and family self-
efficacy (Dunst et al. 2008; Dunst and Trivette
2009). The use of collaborative processes is
thought to provide families with the training, con-
fidence, and opportunity to assist the child in
increasing function in daily life (Hanft and
Pilkington 2000; McWilliam and Scott 2001).
Additionally, collaboration with the family allows
the provider to become more familiar with family
and caregivers’ strengths and routines, helping to
maximize effectiveness of suggested intervention
strategies (Hanft and Pilkington 2000). These
characteristics of collaborative interactions are
believed to lead to improved developmental out-
comes for young children with or at risk for devel-
opmental delays or disabilities because of the
increased practice of skills they receive with inte-
grated interventions (McWilliam and Scott 2001).
4 A. L. Fiss and L. Jeffries
Photograph 1 Family-centered care is a key component
of EI for children with cerebral palsy
Goals and Environment
Body Function and Structure, Impact
on Activity, and Participation
in Activity
Infants and toddlers with CP typically present
with a complex array of primary and secondary
impairments leading to activity limitations and
participation restrictions that develop at variable
rates through childhood. Primary impairments
common to cerebral palsy include aberrations in
muscle tone, postural stability, and motor coordi-
nation. These primary impairments often lead to
the development of secondary impairments such
as decreased strength, range of motion, and endur-
ance as children age (Jeffries et al. 2016). The
development of these secondary impairments has
been noted to be present as early as young pre-
school age (Jeffries et al. 2016). Other secondary
impairments common in children with CP include
difficulty swallowing, breathing, communicating,
or learning. Depending on their Gross Motor
Function Classification System (GMFCS) level,
children with CP reportedly reach about 90% of
their gross motor functional potential by 5 years of
age or younger (Rosenbaum et al. 2002),
underscoring the importance of early identifica-
tion and diagnosis of cerebral palsy to allow ear-
lier access to intervention service.
EI for children with CP is directed at maximiz-
ing functional outcomes and participation in home
and community activities through the
amelioration of primary and secondary impair-
ments or the identification of “self-determined”
preferences for the development of functional
activities (Rosenbaum and Stewart 2004).
Through evaluation, the family’s priorities for
activity and participation are determined, and ser-
vice providers identify impairments of body func-
tion and structure that may impact the child’s
ability to fully engage in daily routines. Collabo-
ration occurs between the family and service pro-
viders to create an intervention plan that directs
the family in strategies to facilitate functional
development, address impairments, and deter-
mine environmental modifications that may be
indicated. Simeonsson (2000, p. 6) suggests the
goal of EI “is to prevent disabilities in infants and
young children by reducing or removing physical
and social barriers and by promoting their growth,
development, and well-being throughout stimula-
tion and provision of support.” This process
should be individualized, collaborative, compre-
hensive, and family-centered. EI activities should
also be strength-based, focusing on acknowledg-
ing the assets of children with CP and their fam-
ilies and on helping families use these assets to
improve function and participation.
Personal Factors
Personal factors are aspects of the child’s life and
background that are not specific to their health
condition or health status and include characteris-
tics such as age, race, culture, gender, coping
style, family socioeconomic status, other health
factors, and personal preferences (Grotkamp et al.
2012). Personal factors require a formal acknowl-
edgment by providers as a key component of EI
services for children with CP (Rosenbaum
and Stewart 2004). Using Bronfenbrenner’s
bioecological systems theory (Bronfenbrenner
and Morris 2006) as a framework for examining
child development, the child is considered part of
a system of relationships that form the world in
which the child grows. At the core of this system
is the child, who plays an active part in his/her
own development. Family and providers should
consider the child’s preferences including his/her
Early Intervention Services for Young Children with Cerebral Palsy
Fig. 1 Illustration of
Brofenbrenner’s model of
bioecological systems
theory applied to early
intervention
interests, likes, and dislikes when planning and
implementing services. For example, if the child
loves dinosaurs, the family and providers should
consider this interest in the toy choice or activities
implemented in service provision. The family and
child are more likely to complete activities that are
meaningful and interesting and activities that they
prefer to choose to do. Similarly, if the child tends
to be more alert and interactive in play activities in
the mornings, service providers may schedule
sessions and provide intervention activities more
focused to the morning times (Fig. 1).
Understanding personal preferences extends
beyond the child to the family in the EI setting.
Providers must recognize and respect individual
family’s preferences in addition to those of the
child. For example, if the parents indicate they
are not interested in exploring wheelchair options
for their child, the provider should respect this
decision and support alternative transportation,
5
mobility, and positioning strategies. Understand-
ing child and family personal preferences is key to
providing services not just within the framework
of the ICF but also employing the foundational
tenants of family-centered care.
In Bronfenbrenner’s Model (Brofenbrenner
and Morris 2006), the family is part of the micro-
system in which the child develops. The micro-
system includes those individuals that the child
interacts with directly such as the immediate fam-
ily, day care/preschool providers and peers, close
extended family, and EI providers. The interac-
tions between the child and the individuals within
the microsystem mutually influence each other’s
behaviors and interactions. For example, a child’s
temperament may impact the daily interactions
between the child and caregiver. Similarly, the
caregiver’s interaction style may influence their
responsiveness to and relationship with the child.
6 A. L. Fiss and L. Jeffries
Environment Factors
IDEA requires that EI services be provided in the
natural environment to the extent possible (IDEA
2004). Natural environments are the home,
childcare, or community locations where infants
or toddlers typically spend time during the day
(Bricker 2001). Natural environments also
include the routines and activities that occur in
the context of family and social life (Bruder and
Dunst 1999; Dunst et al. 2001; McWilliam 2000).
A guiding principle of EI is that “infants and
toddlers learn best through every day experiences
and interactions with familiar people in familiar
contexts” (OSEP 2008). Services completed in
these natural environments allow providers to
work with families to facilitate enhanced partici-
pation in typical routines and activities using the
materials and environmental structures in which
the child needs to engage.
By providing intervention in the natural envi-
ronment, the service provider has an opportunity
to assess the child’s ability to function in everyday
life and assess the need for modifications to the
environment. The natural environment for chil-
dren with CP includes the physical, social, and
attitudinal environments. The physical environ-
ment includes the structural characteristics of the
child’s home or community including the space,
terrain, temperature, and materials or resources
available (World Health Organization 2007).
Lack of space to explore or lack of adaptive or
accessible equipment may create challenges for a
child with CP to fully engage in daily routines.
The social environment includes the policies,
rules, and laws such as federal and state policies
and specific program policies and rules that may
impact the ability of the child to participate in
daily activities (World Health Organization
2007). For example, funding policies for equip-
ment or local community policies related to access
to services or resources are considered social sup-
ports (Jeffries and Fiss 2016). The attitudinal
environment includes the attitude toward and
encouragement for full participation from the
family, community members, and peers (Jeffries
and Fiss 2016). Service providers play a role in
assessing each component of the environment and
working with families to identify strategies to
capitalize on environmental strengths and to over-
come real or perceived environmental barriers
(Photograph 2).
The bioecological systems theory
(Brofenbrenner and Morris 2006), introduced
under personal factors, also focuses on the impact
that environment has on the child’s development.
Bi-directional influences on child development
extend beyond the microsystem to the meso-
system, exosystem, macrosystem, and
chronosystem. The mesosystem is a layer that
represents the connections between the various
components of the microsystem, for example,
interactions between the family and the EI service
provider. These interactions have an impact on
how the various members of the microsystems
engage with child and may subsequently impact
development. The exosystem includes the larger
social system in which the child does not directly
interact but which influences the child’s develop-
ment due to the positive or negative forces pre-
sent. For example, the parent’s work environment
is part of the exosystem. Parent stress at work or
the loss of a job may impact the child, even though
the child does not directly interact with that envi-
ronment. The macrosystem includes the public
policies, such as IDEA, and the culture and beliefs
of the community in which the child lives. Poli-
cies under IDEA often impact how often service
providers interact with the child and family. The
family’s cultural beliefs and values are important
components of EI services, as these beliefs and
values may impact priorities for and design of
intervention. Finally, the chronosystem takes
into account the personal and societal changes
that happen over time. Understanding the child’s
environment includes not only the physical envi-
ronment, but also the social/psychological envi-
ronment facilitates EI services by prioritizing and
collaborating with the family.
Early Intervention Services for Young Children with Cerebral Palsy
Photograph 2 EI services are typically provided in the
natural environment to maximize the opportunities for the
child to apply skills in everyday contexts
Technique
Evaluation
For infants and toddlers with CP, developmental
evaluations and assessments should guide collab-
orative intervention planning for children and
their families. In EI programs under IDEA, eval-
uation is defined as the process to determine if a
child is eligible for services (IDEA 2004). This
process generally includes broad evaluation of
multiple domains of development including
assessment of gross and fine motor skills, speech
and language abilities, cognition, adaptive behav-
ior, and play. If the child is determined to be
eligible for services, a more specific assessment,
focusing on a single developmental domain, is
generally completed to gather more detailed infor-
mation about the child’s strengths and challenges.
The provider should conduct a comprehensive
7
evaluation of the domain(s) of interest in collab-
oration with the parent or caregiver to ensure a
family-focused strategy with emphasis on family
needs, priorities, and preferences (DEC 2014).
This collaborative process should involve shared
decision making, where providers and parents/
caregivers work together to identify the child’s
strengths and abilities and the parent’s concerns
and priorities as they collaboratively develop a
plan of care. The provider should attempt to indi-
vidualize the evaluation and assessment process
for each child and family, remaining respectful of
each family’s culture and specific preferences
(Chiarello and Catalino 2018). Providers should
offer flexible scheduling and settings for the eval-
uation to occur in ensure family participation and
input in the process (Chiarello and Effgen 2006).
In addition to working with the family, EI pro-
viders should work in collaboration with other EI
professionals to gather relevant information while
avoiding unnecessary redundancy to ensure the
development of a cohesive plan of care. Proactive
communication and sharing of knowledge and
evaluation information between disciplines can
strengthen the planning process. Team members,
including the family, should discuss evaluation
findings collectively to determine priorities and
highlight goal areas for intervention.
In some EI settings, evaluations are completed
using arena assessments. Arena assessments are
conducted when a single provider interacts with
the child and parent, while other team members
observe. The team members assess the child
simultaneously, using both standardized assess-
ment tools and informal methods (Foley 1990).
This allows for the child to engage with one per-
son and decreases the need for the child to quickly
develop a bond with many new individuals. Team
members engage as needed with the primary eval-
uator to introduce the needed evaluation items.
Within this method, all team members gain the
needed information to score developmental
assessments, which support the determination of
the child and family’s eligibility for EI services.
Evaluations typically begin with the EI pro-
vider asking detailed questions about the family’s
goals, the child’s medical and developmental
history, family and child routines, and the
8 A. L. Fiss and L. Jeffries
environment. Routines-based assessment
includes interview questions focused around the
family routines and provides an opportunity for
the family to describe successes and challenges
for their child (Campbell et al. 2008; McWilliam
2000). Open and direct communication between
the EI provider and the family is important. The
use of interpreters, as appropriate, should be con-
sidered to ensure accuracy and understanding of
all information shared. Providers should provide
ample opportunity for the family to express their
concerns, ask questions, and share relevant infor-
mation about their child. The information gath-
ered should serve as the basis for the detailed
evaluation and intervention planning. Information
on the child’s daily routine, participation in home
and community activities, and environmental sup-
ports and barriers in the home and community
may help to identify family challenges and poten-
tial intervention activities to remediate these chal-
lenges. The use of broad open-ended questions,
such as “tell me about your daily routine” or
“what aspects of your daily activities are more
difficult to complete,” allows the family to share
specific information that may not be answered by
standard questioning. EI providers may gather
information from other key individuals in the
child’s life such as childcare practitioners or
other health-care providers and through direct
observation of the child and family (DEC 2014).
Whenever possible, examinations in EI should
occur in the natural environment of the child.
Conducting examinations in the settings in
which the child typically functions and interacts
with others allows the EI provider to gain an
accurate understanding of how the child functions
and participates within the context of daily life
and to determine potential strengths and chal-
lenges with daily tasks. Practitioners should use
assessment materials and strategies that are appro-
priate for the child’s age and level of development
and accommodate the child’s sensory, functional,
and communication abilities and social and emo-
tional characteristics and take into consideration
the child’s cultural and linguistic preferences
(DEC 2014). Using toys and materials from the
child’s environment allows for familiarity of the
child with their environment and decreases the
“newness” of the assessments. EI providers
should employ activity-based assessments and
naturalistic observation. By observing the child
moving, interacting with, and manipulating
items in his/her environment, practitioners can
gain an understanding of the child’s strengths
and needs. Observation of both free and structured
play opportunities provides a means to observe
and document the child’s behavior in interacting
with toys or with others.
In addition to observation of skills, EI pro-
viders should consider the use assessment tools
with strong psychometric properties to ensure
proper documentation of ability levels and to
track progress over time. Standardized assess-
ments should be selected based on the intended
purpose of the examination. Attention to whether
assessments are norm-referenced or criterion-
referenced measures is important. Norm-
referenced measures allow for comparison of a
child’s abilities in reference to peers of the same
age. Criterion-referenced measures allow for
tracking of progress over time. Additionally, pro-
viders should ensure the selected assessment tool
addresses the desired dimension of the ICF model
and is valid and reliable for the child’s age, the
diagnosis of CP, and the time between assess-
ments. Results of these standardized assessments
can assist providers in identifying the “child’s
current levels of functioning, determine the
child’s eligibility for EI services, and guide the
development of the intervention plan” (DEC
2014). EI providers, under IDEA, should refer to
state policy to identify if specific assessments are
required to determine the child’s eligibility.
Table 1 highlights several common standardized
assessments used in EI.
EI providers have a responsibility to share
information from their assessments with the fam-
ilies they serve. Results of assessments should be
provided to the family in a format that is easily
understandable and useful. In order to facilitate
family understanding, reports should be written
using family-friendly language. Family-friendly
language is clear and concise to describe the
results of the evaluation, avoiding medical jargon
and complex assessment terminology. Discussion
should occur with the family to determine how
Early Intervention Services for Young Children with Cerebral Palsy
Table 1 Standardized assessment tools using the ICF framework
Measure
Participation
Canadian occupational performance
measures (COPM)
Activity
Multi-domain
Ages and stages questionnaire 3
Battelle developmental inventory –
Second edition, normative update
(BDO-2NU)
Bayley scales of infant and toddler
development ®, third edition(Bayley-
III ®)
Carolina curriculum for infants and
toddlers with special needs
(CCITSN)
Hawaii early learning profile (HELP)
Motor
Alberta infant motor assessment
(AIMS)
Gross motor function measure
(GMFM)
Harris infant Neuromotor test
(HINT)
Peabody developmental motor scales
– Second edition (PDMS-2)
Pediatric evaluation of disability
inventory (PEDI)
Posture and fine motor assessment of
infants
Test of infant motor performance
(TIMP)
Toddler and infant motor evaluation
(TIME)
Communication/ language
Mac Arthur-bates communicative
development inventories
Preschool language scale 4 (PLS-4)
Receptive-expressive emergent
language test third edition (REEL 3)
Rossetti infant-toddler language
scale
9
Age range Purpose
All ages To determine an individual’s self-perception of
performance in and satisfaction with their
participation in daily activities
4–60 months To screen children for developmental delays
Birth–7 years, To screen and evaluate early childhood
11 months developmental milestones
1–42 months To examine early childhood development
Birth–5 years To assess development and develop an intervention
program designed for infants, toddlers, and
preschoolers with mild-to-severe disabilities
Birth–36 months To assess infants and toddlers in the domains of
cognitive, language, gross motor, fine motor, social-
emotional, and self-help
Birth–18 months To measure the motor development for infants at
risk for motor delay
5 months–16 years To evaluate change in gross motor function in
children with cerebral palsy
3–12 months To identify early signs of cognitive and neuromotor
delays in infants with known risk factors
1–72 months To assess the motor skills of children via gross
motor, fine motor, and total motor
6 months–7 years To assess functional capabilities and performance,
monitor progress in functional performance, and
evaluate therapeutic or rehabilitative progress.
2–12 months To determine if an infant’s motor skills are
developmentally delayed.
34 weeks post- To test the functional motor behavior in infants.
conceptual age –
4 months post term
4 months–3.5 years To measure gross and fine motor skills
8–30 months To assess children’s developing abilities in early
language, including vocabulary comprehension,
production, gestures, and grammar
Birth–6 years, To assess the development of language skills
11 months
Birth–3 years To identify young children that are acquiring
language at a significantly delayed pace and
determine if there is a significant discrepancy
between receptive and expressive processes of
emergent language
Birth–3 years To assess the preverbal and verbal aspects of
communication and interaction in the young child
(continued)
10 A. L. Fiss and L. Jeffries

Table 1 (continued)
Measure
Test of early communication and
emerging language
Adaptive behavior
Vineland adaptive behavior scales –
Third edition (Vineland 3)
Early coping inventory
Play
Transdisciplinary play-based
assessment 2
Impairments
Early clinical assessment of balance
(ECAB)
Early activity scale for endurance
(EASE)
Functional strength assessment
(FSA)
Infant/toddler sensory profile
Movement assessment of infants
(MAI)
Test of sensory functioning in infants
Age range Purpose
2 weeks–24 months To assess the earliest communication behaviors and
emerging language abilities in infants and toddlers
Birth–90 years To assess intellectual and developmental disabilities
4–36 months To assess the coping-related behavior of children
6 months–6 years To assess four critical developmental domains –
Sensorimotor, emotional and social,
communication, and cognitive
18 months to 12 years To measure of balance for children with CP
18 months to 12 years To measure of parent-reported endurance for
children with CP
18 months to 12 years To assess functional strength
Birth–36 months To examine sensory patterns in young children
Birth–12 months To test motor development including muscle tone,
primitive reflexes, automatic reactions and
volitional movements
4–18 months To assess sensory processing and reactivity
On the following subdomains: Reactivity to tactile
deep pressure, visual tactile integration,
Adaptive motor function

they would like to receive information relative to
format and to depth of information. Some families
may prefer a concise summary of the information
with subsequent verbal explanation from the pro-
vider. Other families may prefer to read detailed
reports containing all relevant information. Pro-
viders should not assume to know the individual
preferences of families and should work to ensure
the family understands all information provided
to them.
Under IDEA, the evaluation and assessment
process should culminate in the development of
the Individualized Family Services Plan (IFSP).
The IFSP is a formal plan that outlines the EI
services the child will receive and how the ser-
vices will be administered. While state-to-state
variations exist in the format for the document,
the IFSP must contain the specific elements
outlined in the federal law including:
1. The child’s present levels of functioning and
need in the areas of physical development,
cognitive development, communication devel-
opment, social or emotional development, and
adaptive development, based on
objective data.
2. Family information, including resources, pri-
orities, and concerns.
3. Measureable results or outcomes expected to
be achieved by the child and family, including
the criteria, procedures, and timelines used to
determine progress toward achieving the
outcomes.
4. The specific early intervention services the
child and family will receive including the
frequency, intensity, and methods for deliver-
ing services.
5. Identification of the natural environment where
services will be provided or a statement of
justification if the services will not be provided
in the natural environment.
6. The projected dates of when intervention will
begin including length, duration, and fre-
quency of services.
Early Intervention Services for Young Children with Cerebral Palsy
7. Identification of the service coordinator who
will be responsible for the implementation of
the plan and coordination of services.
8. Steps to be taken to support the child’s transi-
tion from early intervention into school-based
or other appropriate services (IDEA 2004,
20 U.S.C. 1436 § 646(d)).
Interventions
EI services should be “dynamic and individual-
ized” to the child and family needs and priorities
and interventions for infants and toddlers, and
their families should be based on validated prac-
tices and best available research evidence (OSEP
2008). Intervention activities should be designed
and implemented in a manner that assists in devel-
oping the family’s capacity to facilitate their
child’s development (Bailey et al. 2006). Specific
interventions may address mobility, communica-
tion, self-care, learning, and/or play skills focus-
ing on the areas of priority identified by the family
and considering the family and child values and
culture. Consideration should be given to how
best to support the child in participation in home
and community activities, including environmen-
tal modifications or assistive technology to
enhance the ability of the child to engage in activ-
ities with others. Interventions to specifically
address impairments of body function and struc-
ture common to children with CP may be incor-
porated into routines to improve developmental
skill performance or to prevent the development
of secondary impairments.
When possible, interventions should be pro-
vided in the child’s natural home or community
environment and should focus on incorporating
activities in the child’s typical routine. This allows
for enhanced generalization of skills to everyday
settings and enhances the family’s ability to incor-
porate activities into their daily life. The use of the
child’s toys and materials from their home envi-
ronment in developmentally appropriate activities
allows for improved carryover of activities.
11
A study by Campbell et al. (2009) noted that
physical and occupational therapists often
brought their own materials into the home, simu-
lating the clinic environment. This can lead to
confusion for the family who may be unable to
replicate activities once the materials are removed
after the session. If intervention cannot be pro-
vided in the child’s natural environment, care
should be taken to simulate this environment as
much as possible, and discussion with the family
on how to incorporate activities into daily life
should be a priority of intervention.
The use of coaching models has been advo-
cated in the EI literature (Rush et al. 2003). In this
model, the service provider acts as a “coach” to
the family providing guidance to help them
achieve self-identified goals in their daily routine
(Campbell 1997; Rush et al. 2003). Coaching is an
interactive process of observation and reflection
with the family regarding routines and challenges
encountered in the daily life (McWilliam and
Scott 2001). The coach jointly develops a plan
with the family that includes specific outcomes
so progress can be determined or modifications
identified. Within the coaching model, a five-step
process can be implemented to confirm and assess
the progress achieved. Intervention then focuses
on helping the family, or other care providers
determine appropriate solutions or modification
to these issues to support the child’s participation
in life activities and experiences (McWilliam
2001; Rush et al. 2003). Children’s learning, it is
implied, happens between visits based on the
family interactions (McWilliam 2001). Coaching
has been found to lead to improved relationships
and commitment between the service provider
and the family (Cripe et al. 1997) and improved
motor development and functional mobility
(Blauw-Hospers et al. 2011; Hielkema et al.
2011). This success, along with positive feedback
from families, has led many professionals in the
field to recommend this model for use in EI pro-
grams (Cripe et al. 1997; McWilliam 2001; Rush
et al. 2003) (Table 2, Photograph 3).
12 A. L. Fiss and L. Jeffries

Table 2 The five phases of coaching

Coaching
phase Description
Initiation The joint development of a plan with specific outcomes. The coach focuses on the family’s goals by
clarifying the child’s abilities, determining outcomes, and identifying intervention strategies
Observation The provider may observe the child and family during a new or challenging skill, or the family may
observe the provider demonstrating an intervention strategy. Observations focus on what is successful
and what is not, as well as the precursors to the activities and the influence of the environment
Action Following strategy and skill development, the family and child implement the new skills or strategies.
At the next appointment, the strategies are revisited and successes and challenges reviewed
Reflection The provider/coach and family discuss the family’s impressions of the intervention, compare and
contrast the results, confirm the family’s understanding and implementation of the strategies, and
modify and intervention plan as indicated
Evaluation The coach and often the family review the effectiveness and results of the intervention/coaching
session and identify if outcomes have been accomplished
Adapted from Hanft et al. (2004), Rush et al. (2003)

programs within a state. Three team models exist

Photograph 3 The coaching model is frequently used in
EI to strengthen the capacity of the family to meet the needs
of their child
Teaming Models
EI services provided under IDEA must be pro-
vided using teams that include the family, a ser-
vice coordinator, and professionals from a variety
of disciplines. A team is a group of people who
come together with a common purpose and phi-
losophy (Bruder 1995), and under IDEA, each
team must implement the components of EI ser-
vices described above. State EI programs deter-
mine the team model implemented; therefore,
differences exist between states and often between
in service delivery with two being more common
in EI programs under IDEA. Methods of team
member communication and how services are
coordinated and implemented differentiate the
common models.
On multidisciplinary teams, each team mem-
ber performs a separate evaluation within his or
her area of specialization and writes an individual
report. Service plans include discipline-specific
goals and professionals implement services,
often in isolated settings (McGonigel et al. 1994;
Rush and Shelden 1996; Warner 2001). When
providers function in this manner, team members
may fail to see the child as a whole, and services
are frequency fragmented resulting in overlaps or
gaps in services (Orelove et al. 2017). Team mem-
bers function as independent specialists and rarely
communicate and coordinate services leaving the
parent to act as the case manager (McGonigel
et al. 1994). A multidisciplinary team model
does not meet the intent of Part C under IDEA
and, however, is commonly used in general EI
service provision, such as outpatient clinic
practice.
Interdisciplinary teams are more likely to
include the family and care providers as team
members (McGonigel et al. 1994). Evaluations
are typically completed by a team of professionals
at the same time or at least on the same day but
occasionally are performed separately by profes-
sionals from different disciplines. A hallmark of
Early Intervention Services for Young Children with Cerebral Palsy
the interdisciplinary model however is formal
channels of communication, typically in the
form of team meetings, which are implemented
to share information and develop and service
plans. In this model, providers still perform inter-
ventions on an individual bases. Therefore, the
family must still integrate information from a
variety of providers, and the focus of services
may be oriented toward the child, as compared
to the family (Briggs 1997). Depending on the
state’s regulations, this teaming model may be
implemented in the EI program.
The transdisciplinary team model has been
recognized as a best practice for EI services and
is the most frequently used in EI (Guralnick 2001;
Orelove et al. 2017). The transdisciplinary model
provides a framework for providers and families
to exchange ideas and integrate the expertise of all
of the team members (McWilliam 2001; Shelden
and Rush 2001). Allen et al. (1997) state: “The
collaborative aspects ensures that team members
make use of their own expertise and specialized
skills while assimilating the knowledge and
expertise of other team members. In this way
teams are most likely to create flexible, functional,
and developmentally appropriate treatment goals
that are responsive to the changing needs of chil-
dren and their families.” (p. 29) In the transdisci-
plinary model, evaluations, service planning, and
interventions are coordinated and implemented in
a collaborative manner. Teams perform arena
assessments as previously described and then
meet with the family to determine if the child is
eligible for the EI program. If eligible, the team
collaboratively develops an intervention plan that
is typically implemented by one team member, the
primary service provider.
The primary service provider (PSP) is identi-
fied based on the child and family’s current prior-
ities and the skills and expertise of the individual
team members. The other team members support
the PSP through the “role release” process that
includes training and consultation. The PSP is not
trying to emulate the other providers but instead
implement the shared strategies to support the
child and family and, in turn, provide the family
with a consistent individual for communication
and interactions. As the child and family’s
13
priorities change, the PSP can coordinate with
other team providers to consult or potentially
take on the PSP role. The proposed benefits of
the PSP model are consistent and efficient ser-
vices, with improved communication and less
intrusion on family, less duplicative intervention
plans, and decreased service costs (Shelden and
Rush 2001; Foley 1990; Sheldon and Rush 2001;
Warner 2001).
With all service delivery models and interven-
tion planning, it is important for service providers
to reflect on the personal factors of the family to
determine if there are child and family circum-
stances that may warrant the implementation of an
alternate service model. Families may be
balancing multiple responsibilities or have greater
areas of need in learning to support their child.
They may report they do not have the current
capacity to consistently implement interventions
at home. In these instances, the family and pro-
viders may determine that more intensive direct
intervention would be more appropriate until the
family has developed sufficient capacity to more
fully meet the needs of their child. Individualiza-
tion of services is a core component of EI and
should be considered in service delivery model
and specific intervention planning.
Evidence of Effectiveness
EI providers should emphasize the use of evi-
dence-based practice, which encompasses clinical
expertise, family and child preferences, and best
research evidence in working with young children
and their families. However, evidence to inform
the effectiveness of EI for children with cerebral
palsy is limited, and investigation of EI programs
is challenging due to the variability of programs
and the heterogeneity of the children and families
served (Hadders-Algra 2014). Overall, this leads
to relatively inconclusive findings related to the
impact of EI for children with cerebral palsy.
EI using general developmental programs
appears to lead to positive improvements in
motor developmental outcomes (Blauw-
Hospers and Hadders-Algra 2005; Spittle et al.
2012). Additionally, improvements in cognitive
14 A. L. Fiss and L. Jeffries

development up until 3 years of age have also CP 9–36 months of age has been found to lead to
been noted in preterm infants with the use of accelerated attainment of walking and a decreased
general developmental programs (Spittle et al. need for support for ambulation (Mattern Baxter
2012; Orton et al. 2009; Vanderveen et al. 2009; et al. 2013). Improvements in bimanual function
Wallander et al. 2014; Blauw-Hospers and have been noted for children with CP following
Hadders-Algra 2005; Ziviani et al. 2010). It is action-observation training of upper limb function
less clear if these improvements persist after pre- (Guzzetta et al. 2013) and constraint-induced
school age (Spittle et al. 2012; Vanderveen et al. movement therapy (Gordon 2011). Additionally,
2009). Other studies have failed to demonstrate the use of enriched environments for intervention
the effectiveness of EI to improve motor or cog- has been associated with small but positive
nitive outcomes. Nelson et al. (2001) examined improvements in motor outcomes for infants
preterm infants to determine in the impact of with CP (Morgan et al. 2013).
auditory, tactile, visual, and vestibular stimula-
tion, noting no significant difference on motor or
cognitive development. Similarly, Ohgi et al. Cases
(2004) determined that behavioral interventions
for infants with cerebral injuries led to improved
behavior-state regulation, but no impact on motor
Case 1
or cognitive development was noted. Both of
Alejandro is a 25-month-old child with CP
these studies were underpowered, representing a
classified as Gross Motor Function Classi-
limitation of their findings.
fication System (GMFCS) level II. He is
Evidence does support the use of family-
able to walk independently on even surfaces
centered services to promote child and parent
but displays difficulty with balance on
well-being and satisfaction with services (King
uneven surfaces. He demonstrates
et al. 2004; Benzies et al. 2013). Investigators
age-appropriate fine motor and play skills
have also examined the impact of parent educa-
and mild delays in expressive communica-
tion and psychosocial support on maternal mental
tion. He currently uses approximately
health (Benzies et al. 2013). Results indicate that
15 single words independently but tends to
maternal anxiety and depression are reduced and
rely on gesturing to communicate.
maternal self-efficacy is improved following these
Alejandro’s parents report their main areas
interventions. Linking these results with the belief
of concern are his ability to walk without
that services can positively impact material stress
falling and his ability to communicate ver-
supports the need for future investigation to deter-
bally his wants and needs. He has been
mine how this component of services mediates the
receiving biweekly EI services with the
child’s developmental outcomes. Research has
physical therapist as the primary service
also examined the use of a coaching service
provider since he was 3 months of age.
model with infants who were at high risk for
During a recent session, the parents indi-
delayed development (Blauw-Hospers et al.
cated that they were interested in exploring
2011; Hielkema et al. 2011). Coaching was asso-
a local community parent and child gym-
ciated with improved motor development and
nastics class for Alejandro to help work on
functional mobility at 18 months chronological
his balance but were concerned with his
age, leading to the consideration that coaching is
ability to keep up with the class activities.
potentially effective in supporting family-
The physical therapist arranged to meet
centered care.
the family at the gymnastics class to offer
Specific developmental interventions have also
suggestions and guidance on how to
shown promise in improving developmental skills
in young children with CP. For example, the use of (continued)
early, intensive treadmill training for infants with
Early Intervention Services for Young Children with Cerebral Palsy
facilitate Alejandro’s participation in the
class and to use this opportunity to focus
on their priorities. The gymnastics coach
was open to learning strategies to include
Alejandro in class activities and encouraged
the physical therapist and family to attend.
Following observation of the class struc-
ture, the physical therapist, family, and
gymnastics coach collaboratively identified
activities that would positively challenge
Alejandro’s balance abilities and encourage
strengthening while participating with other
children in the class. They identified walk-
ing on the balance beam and over various
mats as activities that challenged his bal-
ance. They also encouraged Alejandro to
participate in obstacle courses that included
climbing over and under equipment and
through the ball pit. The goal was for
Alejandro to complete the activities as inde-
pendently as possible but to offer “just
right” assistance to support success.
The physical therapist had previously
consulted with the EI team speech language
pathologist to determine opportunities to
facilitate language and specific strategies
the parents and gymnastics coach could
use to encourage verbal communication.
Following these recommendations, the
physical therapist and family identified
words like “go,” “stop,” and “again” that
they could model and encourage Alejandro
to us during the class sessions.
The physical therapist scheduled two
additional sessions during the community
gymnastics class. After these sessions, the
family reported they were confident with
facilitating the activities with Alejandro
and with the coach’s ability to modify new
activities. The physical therapist then
scheduled subsequent sessions with the
family in the home setting to address addi-
tional concerns within the daily routine.
15
Case 2
Kayleigh is an 8-month-old child with CP
classified as GMFCS level IV. She was born
at 25-week gestational age and spent
26 weeks in the neonatal intensive care
unit (NICU). During this time, she was
diagnosed with retinopathy of prematurity.
After discharge, she was referred for EI
services. The local team has scheduled an
arena assessment to determine Kayleigh’s
eligibility for services, current developmen-
tal abilities, and to determine the family’s
concerns and priorities. During the assess-
ment, the family identifies difficulty with
feeding Kayleigh as a main concern and
secondary concerns for mobility and vision.
The team notes that Kayleigh is taking for-
mula by mouth, and the family is interested
in introducing cereal and other solid food.
Kayleigh is able to hold her head in midline
for short periods in supported sitting posi-
tions but does not demonstrate the postural
control needed to maintain sitting without
total support. She has difficulty tracking
past midline. After consultation between
the EI providers and the family, the occupa-
tional therapist (OT) is identified as the pri-
mary service provider as she has extensive
expertise in feeding interventions.
The OT begins seeing Kayleigh twice
per week per the IFSP plan of care. She
focuses intervention on preparation for
oral feeding to manage cereal textures,
maintaining the head in midline for feeding.
The OT identifies the need for support to
determine the best equipment for Kayleigh
during meals. The physical therapist
(PT) meets with the parents and OT, and
together they identify the optimal position
for upright feeding. The PT then modifies
the current reclining high chair using
low-tech rolls and pads to allow for consis-
tent support during meals. She also provides
ideas for activities to facilitate functional
positioning and mobility such as rolling
(continued)
16
and sitting. The team vision specialist is
consulted to help identify specific vision
interventions to incorporate into daily activ-
ities. He models the use of a light box to
enhance definition of toys and suggests
using play materials with bold color and
patterns to facilitate visual attention.
Through weekly team meetings, the ser-
vice providers continue to exchange infor-
mation and teach the OT-specific strategies
to engage Kayleigh in daily activities and
facilitate her development. The OT con-
tinues to work directly with the family
with occasional co-treatment sessions with
the other providers as new challenges arise.
Cross-References
▶ Managing Therapies for the Child with Cere-
bral Palsy: An Overview
▶ Physical Therapy Elements in the Management
of the Child with Cerebral Palsy
▶ Occupational Therapy Elements in the Man-
agement of the Child with Cerebral Palsy
▶ Speech and Language Practice Elements in the
Management of the Child with Cerebral Palsy
▶ Therapies in Newborn and Pediatric Intensive
Care Units for Neurologic at Risk Infants
▶ Innovative Approaches to Promote Mobility in
Children with Cerebral Palsy in the Community
▶ School Based Therapy Services for Youth with
Cerebral Palsy: Individuals with Disabilities
Education Act (IDEA)- Part B – Individual
Education Program
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