Cerebral Palsy

Cerebral Palsy
CRITICAL ELEMENTS
OF CARE
Produced by
The Center for Children with Special Needs
Seattle Children’s Hospital, Seattle, WA
Fifth Edition, Revised 5/2011

The Critical Elements of Care (CEC) considers care issues throughout the life
span of the child. The intent of this document is to educate and support those
caring for children with cerebral palsy. The CEC is intended to assist the primary
care provider in the recognition of symptoms, diagnosis and care management
related to a specific diagnosis. It provides a framework for a consistent approach
to management of these children.
These guidelines were originally developed through a consensus process. The
design team was multidisciplinary with state-wide representation involving
primary and tertiary care providers, family members and a representative from
a health plan. Subsequent revisions have utilized the best evidence based
practice recommendations available at the time.
Content reviewed and updated 5/11 by John (Jeff) McLaughlin, MD,
and William Walker, MD.
DISCLAIMER: Individual variations in the condition of the patient, status of
patient and family, and the response to treatment, as well as other circumstances,
mean that the optimal treatment outcome for some patients may be obtained from
practices other than those recommended in this document. This consensus-based
document is not intended to replace sound clinical judgment or individualized
consultation with the responsible provider regarding patient care needs.
© 1997, 2002, 2006, 2011 Seattle Children’s Hospital, Seattle, Washington. All rights reserved.
Table of Contents
Cerebral Palsy
CRITICAL ELEMENTS OF CARE
I. INTRODUCTION TO CEREBRAL PALSY

What Is Cerebral Palsy?.............................................................................................................................................................4
How Common Is Cerebral Palsy?..........................................................................................................................................4
How Is Cerebral Palsy Diagnosed?........................................................................................................................................4
How Are the Patterns of Cerebral Palsy Described?........................................................................................................4
What Are the Causes of Injury in Cerebral Palsy?............................................................................................................5
Are There Associated Risks of Other Disabilities?...........................................................................................................5
How Is the Severity of Cerebral Palsy Described?...........................................................................................................5
Does the Presenting Picture of Cerebral Palsy Stay the Same?....................................................................................5
How Can a Child with Cerebral Palsy Be Best Managed?.............................................................................................6
What Are Some Valuable Characteristics of Optimal Care?.........................................................................................6
When Are Interventions and Treatment Indicated?..........................................................................................................6
Who Can Help in Monitoring the Need for Interventions or Treatments?................................................................7
What Are Some of the Specific Management Issues that Can Occur?........................................................................7
Critical Elements of Care..........................................................................................................................................................9
II. GUIDELINES FOR CRITICAL ELEMENTS OF CARE....................................................................................10
Age < 2 Years.............................................................................................................................................................................11
Age 2-4 Years.............................................................................................................................................................................13
Age 4-6 Years.............................................................................................................................................................................15
Age 6-12 Years..........................................................................................................................................................................17
Age > 12 Years..........................................................................................................................................................................19
III. QUICK-CHECK WORKSHEET......................................................................................................................................21
IV. APPENDIX: REFERENCES AND RESOURCES
Professional Reading List.......................................................................................................................................................22
Information and Organizations..............................................................................................................................................23
Periodicals...................................................................................................................................................................................24
Reading List for Families........................................................................................................................................................24
INTRODUCTION TO CEREBRAL PALSY

Cerebral palsy is an excellent example of a medical How Is Cerebral Palsy Diagnosed?
condition that requires competent, comprehensive, The diagnosis of cerebral palsy is essentially
continuous, compassionate and community-based clinical and is highly dependent on the physician’s
care. It is critical that primary care providers (PCP) be knowledge of normal motor development and its
involved and knowledgeable about the current and variants. In all but the mildest cases, the diagnosis
future care plan for the best outcome for each child. A of cerebral palsy can be made by 12-18 months of
team approach is required to develop this practice age. A thorough search for etiologies is warranted
model. The team members may include community in the young child newly diagnosed with cerebral
service providers such as public health departments, palsy. This includes a thorough history and
early intervention programs/schools or private therapy physical, plus follow-up observation of the
providers including occupational, physical and speech progression of motor abilities at frequent intervals.
therapists. There is also a need for experienced teams Physicians experienced with this disorder, such as
of specialists based at regional centers who have developmental pediatricians, neurologists and
experience in the treatment and management of geneticists, can be consulted to aid in the diagnosis.
individuals with cerebral palsy. The family is at the
To aid in confirming the diagnosis and ruling out
center of the care team.
neoplastic or progressive causes for motor disability
What Is Cerebral Palsy? such as metabolic and neurodegenerative disorders,
magnetic resonance imaging (MRI) is usually
Cerebral palsy is a group of disorders of movement
indicated. The imaging can usually wait until a child
and posture resulting from injury or malformation to
can undergo the study without sedation or done in
the developing central nervous system. There are
conjunction with another procedure. Other diagnostic
many causes for cerebral palsy, with onset ranging
testing may include cultures, immune status, metabolic
from preconception to an arbitrary point such as 24
screening, karyotyping, genetic probes or
months of age. The neurologic impairment is
confirmatory tests for other specific disorders. EEGs,
nonprogressive, although secondary disability can
EMGs and skull films are not useful for the diagnosis
occur. Characteristics of cerebral palsy change with
of cerebral palsy or its etiology.
developmental stages, especially in the first few
years of life. This impairment and resultant How Are the Patterns of Cerebral
disability are both permanent.
Palsy Described?
How Common Is Cerebral Palsy? Cerebral Palsy (CP) represents a group of disorders
Over the last 20 years the birth incidence of CP has of variable etiology and variable clinical
been steady between 2 and 2.5 cases per 1,000 live presentation. Efforts to characterize individuals with
births. Alarmingly, the most recent estimate of CP may occur for a variety of reasons: clinical
prevalence in children from the CDC is 3.6 per description, prediction of future status, and to
1,000 in school age children. There is essentially monitor changes in function. These methods
no mortality due to CP except in children who incorporate information from several dimensions:
cannot roll over or swallow on their own. This 1. Topography of the Impairment: the parts of
small group of children has a high mortality rate. the body that are involved (quadriplegia,
Most children with CP have a long adult life span hemiplegia, diplegia)
ahead so that care in childhood should take adult 2. Type of Impairment: is the body stiff (spastic
function and participation into account. – most common), loose (hypotonic) or exhibiting
abnormal motor control (athetoid, ataxic,
dystonic)
Critical Elements of Care: Cerebral Palsy 4

3. Severity of Mobility Limitations: the Gross In children with cerebral palsy, multiple disabilities
Motor Function Classification System, which tend to be the rule rather than the exception; 80%
ranks severity on a five-point scale by age groups, will have at least one associated disability, while
is the best way to describe severity (see below) 40% will have three or more associated disabilities.
Studies have demonstrated that injuries to certain Despite these multiple challenges, many children
areas of the brain result in consistent patterns with CP can become healthy, productive adults.
of impairment. This observation has led to the
How Is the Severity of Cerebral
“topographical” descriptors of various spastic forms
of cerebral palsy such as hemiplegia, diplegia or Palsy Described?
quadriplegia, which are thought to be the result of Traditional methods to classify the severity of CP
pyramidal tract injury. Certain patient populations are have limited reliability and validity. Newer systems,
predisposed to a particular “type” of cerebral palsy, including the Gross Motor Function Classification
as in the case of premature infants and spastic System (GMFCS) have been created and validated to
diplegia. The extrapyramidal types of cerebral palsy consistently describe gross motor function among
(athetoid, dystonic, ataxic) will typically involve the examiners. The Gross Motor Functional
entire body. Many children have a “mixed” clinical Classification System (GMFCS) defines five levels
picture, where both spastic (pyramidal) and of motor function for each age group (see www.
extrapyramidal features are present. canchild.ca and look under Motor Growth Measures
for GMFCS-ER). Both researchers and clinicians
What Are the Causes of Injury now use the GMFCS to compare groups of children
in Cerebral Palsy? with cerebral palsy and to describe individual
The injury resulting in cerebral palsy may occur children in medical records.
during the prenatal (including genetic), perinatal or Children who have GMFCS I or II severity are
postnatal periods. The majority of cases are prenatal. ambulatory. Children who have GMFCS III
Many children with cerebral palsy appear to have a severity can transfer independently and walk with
“cascade” of harmful events that often begin in utero assistive devices for short distances. Children who
and continue during and after delivery. The precise have GMFCS IV or V severity require devices
etiology often cannot be identified in 20-30% of such as power mobility and the assistance of other
cases. True perinatal asphyxia at or near term causes a people. The overall severity of a given child’s
small percentage of cerebral palsy cases. impairment is often determined by the other
disabilities that can accompany CP.
Are There Associated Risks of
Other Disabilities? Does the Presenting Picture of
Yes, cerebral palsy is known to have a higher Cerebral Palsy Stay the Same?
risk association with other disabilities. These No, cerebral palsy exhibits an evolving clinical
risks include, but are not limited to: picture over time, secondary to the maturation of
• Seizures: 35-45% the central nervous system; therefore clinical
change should be expected. Because of this “time
• Intellectual disability: 40-60%
effect,” predictions about prognosis are rarely
• Visual impairments: 20-60% absolute. The clinical evaluation of these children
• Communication impairments, including hearing: must be ongoing and outcomes should be carefully
30% assessed and reassessed.
• Feeding difficulties A changing clinical picture may be the natural
progression of the primary injury, modified by
• Behavioral concerns
maturation of the central nervous system (i.e.,
• Sleep problems increasing tone or spasticity), or it may be a “new”

finding identified by assessment methods that are age- • An effective health care system is a comprehensive
dependent (delayed language or cognitive abilities). source for the patient’s routine, as well as, specialty
The clinical change may also be a result of the care needs. A child’s cerebral palsy does not prevent
emergence and/or identification of other associated her from contracting ordinary childhood diseases,
deficits. The evolving appearance of signs and such as ear infections and influenza, nor exclude her
symptoms of cerebral palsy, such as changes from from anticipatory care needs, such as immunizations
hypotonia to spasticity, need to be distinguished from and monitoring of physical growth.
progressive disorders such as those caused by • Continuity for these children and their families
metabolic, neoplastic or degenerative disorders. is essential. Following these children over time
permits monitoring of the progression of their
How Can the Child with Cerebral Palsy
disability and reduces redundancy of
Be Best Managed? evaluations. Continuity fosters an anticipation of
The strategic goals in the management of cerebral medical, educational and community needs for
palsy are to enable the child to grow up in the the child and the family and the prevention of
family and community and to achieve optimal further complications through early
independent participation in adult life. Comfort and identification and treatment.
ease of care are additional valued goals. • Competence requires that professionals have
Much of the tactical management of cerebral palsy current training, experience, judgment and interest
is aimed at preventing cumulative secondary in cerebral palsy. No single provider has the time
impairment and disability. Follow-up at regular or expertise to address all of the affected
intervals (directed at assessing motor and functional areas and effectively manage these
developmental progress) is essential in the optimal children while supporting their families.
management of a child with cerebral palsy. • A community-based approach requires
The multi-faceted nature of cerebral palsy requires a appropriate use of community resources in areas of
comprehensive approach. No two cases with cerebral special education, family support systems,
palsy are alike. Interventions directed at one aspect financial support, respite, child care, recreation and
of the child’s problem must be made while taking social participation.
into account the potential impact they may have on • A compassionate approach emphasizes the child,
all areas. Prioritization is crucial. A team of not the disability. Long-term stressors are
experienced professionals is usually needed at both anticipated and countered with appropriate care
the primary and consultative level. and support. Rules are adjusted to serve individual
What Are Some Valuable Characteristics wants and needs. Self-defined choices for quality
of life are respected.
of Optimal Care?
Effective health care systems for children should When Are Interventions and
be family-centered, competent, comprehensive, Treatments Indicated?
compassionate, continuous, community-based Treatment for children with cerebral palsy should be
and culturally appropriate. centered around improved activity, participation and
• Family-centered care encompasses an independence for the child and the family - now and
understanding of the child’s place in the family and into the future. Interventions and therapies should not
the impact of the disability on all family members. be mandated based on the “label” of cerebral palsy.
The family is empowered to play a major role in The effectiveness of any intervention is optimized by
decision-making for their child. Through meetings, periodic review and modification with a constant goal
educational materials and copies of all professional of improving function. Neither the clinical
reports, families are provided the background presentation nor the clinical treatment should be
necessary for making informed decisions. expected to remain static. Anticipating

clinical changes allows for improved monitoring adolescents with acquired jaw deformities. Central
and planning for necessary interventions. and obstructive apnea may be present. Children with
severe visiual impairment may not have a normal
Who Can Help in Monitoring the Need circadian clock.
for Interventions or Treatments? Musculoskeletal Changes
Community and regional resources can assist the
Musculoskeletal changes are often the most easily
PCP and family in making decisions about services.
identified consequences of central nervous system
Early intervention centers, schools and a local
injury in cerebral palsy. Interventions may address the
therapist can monitor the progression of the child’s
physical changes of contracture, muscle imbalance,
abilities. Experienced cerebral palsy teams will
joint instability and body malalignment with the goals
provide the PCP with extended assessment abilities
of preventing deformity, improving function and
and intervention programs needed to assist the child
relieving pain. Professionals participating in the care
and family.
of these children should consider the impact any
What Are Some of the Specific intervention will have on function. Everyone involved
Management Issues That Can Occur? should encourage input from other professionals who
are working with the children, therapists and parents.
Spasticity and Dystonia
A thorough orthopedic assessment should include a
Symptoms such as spasticity and dystonia evolve detailed visual inspection (e.g. gait observation), a
over time and can become problematic. When this hands-on inspection of joint mobility (e.g. passive
happens pharmacologic or surgical interventions are range of motion) and an assessment of joint
available. Community therapists can help monitor alignment.
for these concerns. By developing a working Contractures are more likely in children with
relationship with these professionals, the PCP will spasticity than others. There have been specific
be able to intercede appropriately. The PCP can use musculoskeletal problem areas identified in this
the cerebral palsy team to develop a plan of care for patient population. Spasticity in the hip adductors
these problems. may result in subluxation of the femoral head.
Pain Dislocations of the hips are more common in
nonambulatory children when compared to
Pain is a common problem in children with cerebral
ambulatory children. Subluxation can reach an
palsy at all ages. Many children are remarkably stoic
advanced stage before becoming clinically apparent.
so the provider needs to ask about pain. Pain is most
The hip needs to be relocated in the socket by age 4-5
often due to either musculoskeletal problems, spasm
years to develop properly. There is ample evidence
from spasticity or gastrointestinal issues such as
from prospective studies to support obtaining
reflux and constipation. It is important to search for
hip X-rays beginning between 18-24 months as a
and eliminate causes of pain and to treat pain
standard of practice. The frequency of subsequent
vigorously. Muscle spasm due to fatigue or severe
X-rays depends on hip status and severity of
spasticity is common.
spasticity. Gonad shielding should be routine.
Sleep Problems
Scoliosis is the appreciable deviation of the normally
Sleep problems are common in children with cerebral straight vertical line of the spine. Children with
palsy at all ages. The causes can be complex but cerebral palsy are at risk for scoliosis, especially
can also be due to typical developmental issues. during times of rapid growth, such as the pubertal
Parents may be more likely to respond to wakening in growth spurt. A simple lateral deviation of the spine is
a child with a disability like cerebral palsy for many not a cause for concern. The presence of a twist or
logical reasons but can also reinforce repeated rotation around the vertical axis warrants x-rays and
wakening. Airway problems are common in young orthopedic consultation. In ambulatory children, the
children with tonsillar hypertrophy and in older incidence of scoliosis is less than 10% and usually

appears during the pubertal growth spurt. There is a how best to address these needs. If the child’s needs
30-40% incidence of scoliosis in non-ambulators. are difficult to meet, it may be necessary to refer to
Their scoliosis is more likely to be lumbar and is an experienced cerebral palsy team for evaluations
often associated with pelvic obliquity. and recommendations.
Management decisions in the treatment of scoliosis Seizures
should consider the degree of curvature, the Seizures also require careful evaluation and follow-up
proximity to the age of skeletal maturity and the in children with cerebral palsy. Overall, 35-45% of
linear growth rate of the child. While there is no these children will have some kind of seizure disorder.
compelling evidence that physical therapy, custom The onset of seizures can occur at any time, but
seating, or any treatment for hypertonia can prevent usually begins during the first two years of life.
the progression of scoliosis, all of these treatments Seizures can be of any clinical type, though grand mal
have important roles in helping a child achieve and seizures are reported most frequently. There
maintain function. is a strong correlation between the clinical type of
The goals of orthopedic intervention for scoliosis cerebral palsy and the incidence of seizures. There is
should be: to maintain balance in both the sitting a higher incidence of seizures in children with
and walking positions; to reduce pain; to reduce hemiplegic and quadraplegic (60%) cerebral palsy.
areas of increased pressure resulting in decubitus; Seizures are relatively uncommon in spastic diplegia
and to preserve cardiopulmonary functional reserve. (15-30%), and in the extrapyramidal forms (<25%).
It is important that surgical repair of scoliosis be
Cognitive Abilities
undertaken by an orthopedist who has experience
with individuals with cerebral palsy and in a center Cognitive abilities should be specifically assessed and
with strong postoperative and rehabilitation care must be considered as a comprehensive treatment plan
teams. is developed. Overall, 40-60% of children with
cerebral palsy will have an intelligence quotient below
Therapy and Bracing
70 within the range defined for intellectual disability.
Therapy and bracing concerns can be evaluated in The severity and frequency of intellectual disability is
the community by therapists, rehabilitation medicine related to the clinical type of cerebral palsy. More than
physicians and orthopedists. Therapy is more 75% of children with hemiplegia, diplegia and athetoid
effective when directed toward functional goals cerebral palsy have normal intelligence, while 75% of
(such as getting up stairs, versus increased ankle children with spastic quadriplegia have intellectual
dorsiflexion). The importance of strengthening, disability. Children with cerebral palsy who have a
practice and maintenance of cardiopulmonary normal intelligence quotient are often at risk for
endurance deserves considerable emphasis beginning learning disabilities.
in the preschool years and continuing through It is known that a high percentage of the children
adulthood for individuals with cerebral palsy. There with severe motor disabilities also have
is ample evidence that muscle strengthening is communication difficulties. There is a close
beneficial and does not worsen hypertonia. Referral
linkage between communication skills and the
to experienced cerebral palsy teams at regional
outcome of cognitive testing. Therefore it is
centers is often helpful.
imperative that the impact of these deficits on the
Adaptive Equipment testing procedures and the child’s communication
Adaptive equipment needs begin at an early age and language skills optimized prior to the
when the child’s need for safety is addressed. The initiation of cognitive assessments.
family may need equipment to bathe, transport or Visual Impairment
position their child in a safe manner. Community Visual impairment is present in more than half of
therapists, in association with early intervention
children with CP. Refractive errors (often severe)
centers/schools, can assist the PCP in determining

and strabismus (esotropias > exotropias) are most in nonambulatory children with CP. Constipation is
common, but nystagmus, cortical visual impairment, common and should be treated vigorously with
visual field defects and complex disorders of visual adequate fluids, stool softeners, bowel stimulants,
control may all be encountered. comfortable adaptive toilet seats and other techniques.
Hearing Problems While gastrostomy/jejunostomy technology and
special formulas make it easier to assure the nutritional
Hearing problems are estimated to be present in well-being of children with severe CP, management
10-15% of children with cerebral palsy. An issues including the need for other surgical
accurate measure of hearing ability is essential. interventions (fundoplication, etc.) may further
While universal newborn hearing screening is complicate the decision-making process.
essential, children with CP may develop
Emotional Support
permanent hearing loss after the newborn period.
Oral Motor Deficits Emotional support for the family is important. All
family members are affected when one member has
Oral motor deficits (dysarthria) can adversely affect a disability. Family stress is intensified by the care
the individual’s speech and feeding abilities. The needs of the child. The PCP can help the family find
child may have a central speech/language deficit support through Washington State Parent to Parent
such as aphasia or a central deficit in motor planning or PAVE - Parents Are Vital in Education (see
(apraxia). references). The local public health department,
Feeding/Nutrition early intervention centers/schools and other agencies
Careful monitoring of the weight and length/height are may help identify other resources to assist the
critical in determining the proper growth of the child. family. If these services are not locally available,
Good nutritional status is essential for healing then referrals to an experienced cerebral palsy team
following surgery. The risk for feeding and nutritional may be of assistance.
concerns in children with cerebral palsy, including Critical Elements of Care
osteopenia, increases with the degree and severity of
The following outline defines functional areas that
the disability. Risk factors for vitamin D deficiency
need to be assessed and the recommended frequency
include lack of ambulation, anticonvulsant use, low sun
for assessment. It also provides the PCP with
exposure and living above 40 degrees latitude, poor
suggestions for appropriate consultations with other
calcium intake and general malnutrition. Providers
specialists, including developmental pediatricians,
should assure that all children with CP receive at least
orthopedists, neurologists, physiatrists (rehabilitation
400 international units per day of vitamin D to
specialists), speech therapists, physical and
maximize bone density and should check 25-hydroxy
occupational therapists, nutritionists, psychologists,
vitamin D levels yearly.
social workers, educators, public health nurses,
Special techniques are required to measure bone equipment vendors and others. Along with these
density accurately by DEXA scan. DEXA scans and specialists, life-long care always involves the child’s
bisphosphonate treatment are best reserved for children family and requires their thoughtful involvement in
with CP who have a personal history of low-impact all decision making. These Critical Elements of Care
fractures. At present, there are no data on the safety of constitute an initial attempt to provide a framework
bisphosphonates given in childhood and continued for for long-term management of such children and
a lifetime. Those with poor calcium intakes should be should not be viewed as a comprehensive manual for
supplemented with calcium (500 to 1,300 mg/day, care.
depending on weight).
Gastrointestinal Problems
Gastrointestinal problems (gastroesophageal reflux,
GI motility disorders and constipation) are common

II. GUIDELINES FOR CRITICAL ELEMENTS OF CARE
GUIDELINES FOR CRITICAL ELEMENTS OF CARE
How To WORKSHEET
The Critical Elements of Care for Cerebral Palsy The Quick Check Worksheet was designed to
were designed to organize and simplify the child’s summarize the Critical Elements of Care using a
care plan. They provide information and education check-off format to identify concerning trends over
regarding the comprehensive needs of an time. There is room for short notation regarding
individual with cerebral palsy. specific problems, treatment regimes or referral
The Critical Elements of Care are divided into options. The worksheet may be used during each office
five age groupings: visit to consolidate the information. Therefore, past
and present concerns can be identified quickly, and
• < 2 years
intervention referrals initiated.
• 2-4 years
• 4-6 years
• 6-12 years
• >12 years
Within each age grouping, six functional
categories are identified:
• Communication
• Feeding and Nutrition
• Musculoskeletal
• Mobility
• Cognition
• Sensory Impairment
In addition, there is a section for Family Issues.
Each age grouping has been divided into functional
categories. These are subdivided into a range
of functional levels and coincide with specific
recommendations for intervention possibilities. By
reviewing the Critical Elements of Care specific to
your patient’s age group, you will be able to assess
the areas of concern, identify the intervention
possibilities and organize and simplify the child’s
care plan.

Critical Elements of Care: Cerebral Palsy

AGE < 2 YEARS
AREAS OF CONCERN ASSESSMENT & INTERVENTION SERVICE COORDINATION
Communication
VERBAL • Assessment of communication (expressive and receptive) for age/
developmental levels
NONVERBAL • Repeat audiologic assessment regardless of newborn hearing screen • ENT/audiologist
result • Early intervention program*
• Review assessment/plan of the early intervention program
• Consider simple augmentative communication devices (picture boards,
adaptive switches, etc.)
Musculoskeletal
CONTRACTURE • Assess ROM every 6 mo. extremities, hips and back
ABSENT • Hip X-ray at 18-24 months
• Ask about pain
CONTRACTURE • Assess ROM every 6 month: extremities, back • Orthopedic consult
PRESENT • Orthopedic evaluation every 6 months, if indicated • Early intervention program*
• Hip X-ray at 18-24 months
• Ask about pain
• Review OT/PT plan (splinting/bracing)
Cognition
AGE-APPROPRIATE • Assess per well-child practice guidelines
DELAYED • Need formal evaluation to accurately determine degree of cognitive • Early intervention program*
delay (once in this age period) • Experienced cerebral palsy
• Consider associated disabilities when choosing appropriate instrument management team
for testing
Feeding & Nutrition
ORAL • Assess per well-child practice guidelines • WIC (ages 1-5)
• Plot weight, length, OFC • Health Dept.
• Maintain weight-length ratio at 5-50th percentile • Early intervention program*
• Review drug-nutrient interaction
• Assess feeding, swallowing skills (duration, parent concerns)
• Consider nutrition consult
• Consider behavioral component / Oral aversions
• OT consult (early intervention program, experienced cerebral palsy
management team)
• May need calorie or nutrient modifications (special supplements)
• Supplement with 400 IU vitamin D
• Measure 25-hydroxy vitamin D levels annually
• Consider supplementation with calcium (500 mg/day)
NON-ORAL Assess at each visit: • WIC (ages 1-5)
• Review drug-nutrient interactions • Experienced cerebral palsy
• Evaluate feeding, swallowing difficulties management team
• Review history of pulmonary problem, recurrent OM and sinusitis
• Ask about pain
• Consider delayed gastric emptying and gastroesophageal reflux
• Consider nutrition consult, OT feeding evaluation, or swallow
evaluation (experienced cerebral palsy management team)
• Consider behavioral component
• Pediatric surgical consultation, as indicated
• Assess nasogastric/gastrostomy/jejunostomy tube site if indicated


AGE < 2 YEARS
Mobility
ASSISTED • Visits per well-child practice guidelines • Early intervention program*
INDEPENDENT or • Yearly assessment of gross motor function and plan for • Experienced cerebral palsy
AMBULATOR recommendations management team
(GMFCS I, II, III)** • Consider PT/OT, adaptive equipment needs
• Consult with an experienced cerebral palsy management team
NON-AMBULATOR • Yearly assessment of gross motor function and plan • Early intervention program*
(GMFCS IV, V) • Consider PT/OT, adaptive equipment • Experienced cerebral palsy
• Consult with an experienced cerebral palsy management team management team
Sensory Impairment
HEARING NORMAL • Assess per well-child practice guidelines
HEARING ABNORMAL • Refer to ENT/audiology • Early intervention program*
• Consider referral to early intervention program for speech therapy, • Experienced cerebral palsy
amplification, sign language management team
VISION NORMAL • Assess per well-child practice guidelines check acuity and binocularity
VISION ABNORMAL • Referral to ophthalmology • Early intervention program*,
visually impaired programs
Family Issues
• Anticipate family’s needs
• Sleep issues for the child and caregivers
• Acceptance/understanding of diagnosis (across all functional areas)
• How to explain to siblings/family members
• Resources: support groups, respite care, information, financial (SSI, CSHCN, DDD), or contact PHN for further resources
• Literature resources, how to care for a child with CP (see references and resources section)
• Establish mutual goals between family and provider
• Address emotional issues: grief, loss (ongoing)
• Foster care, institutional care options and/or respite care
• Lifestyle changes for family, transportation (car seats) and safety issues,
• Specific issues for child and family:
* Annual renewal of prescriptions for needed therapies.

* Robert Palisano, Peter Rosenbaum, Doreen Bartlett, Michael Livingston, 2007
CanChild Centre for Childhood Disability Research, McMaster University
http://motorgrowth.canchild.ca/en/GMFCS/resources/GMFCS-ER.pdf


AGE 2-4 YEARS
Communication
VERBAL • Assess expressive/receptive skills for age/developmental levels
NONVERBAL • Check hearing if not previously done • ENT/audiologist
• Consider assessment/review plan with the early intervention/school for • Early intervention program*
augmentative communication program
• Assistive technology specialist (experienced cerebral palsy
management team) may be needed
• Enroll in developmental preschool at 3 years old
Musculoskeletal
CONTRACTURE • Assess ROM (extremities, back) every 6-12 months
ABSENT • Ask about pain
CONTRACTURE • Assess ROM every 6 mo. (extremities, back) • CP specialist
PRESENT • Ask about pain • Early intervention program*
• Hip/spine X-ray, as indicated
• Review OT/PT plan
• C specialist every 6-12 months
Cognition
AGE APPROPRIATE • Assess per well-child practice guidelines
IMPAIRED • Need formal evaluation to accurately determine degree of cognitive • Early intervention program*
delay (once in this age period) • Experienced cerebral palsy
• Consider associated disabilities when choosing appropriate instrument management team
for testing
• Enroll in developmental preschool at 3 years old
Feeding & Nutrition
ORAL • Assess per well-child practice guidelines • WIC (ages 1-5)
• Consider: nutrition consult (WIC, Health Dept., experienced cerebral
palsy management team)
• Consider behavior component/oral aversions
• OT consult (early intervention program, experienced cerebral palsy
management team)
• May need calorie or nutrient modifications
NON-ORAL Assess at each visit: • WIC (ages 1-5)
• Review drug-nutrient interactions • Experienced cerebral palsy
• Evaluate feeding, swallowing difficulties management team
• Ask about pain
• Consider nutrition consult, clinical feeding evaluation, and/or swallow
evaluation
• Consider behavioral component
• Assess gastrostomy/jejunostomy tube care site


AGE 2-4 YEARS
Mobility
ASSISTED • Yearly assessment to monitor gross motor function, assess for • Early intervention program*
INDEPENDENT or changing needs and to update recommendations • Experienced cerebral palsy
AMBULATOR (GMFCS I, • Consider PT/OT, adaptive equipment needs management team
II, III)** • Consult with an experienced cerebral palsy management team • Coordinate with school/
• Assess potential for power mobility experienced cerebral palsy
• Encourage adaptive sports and aerobic exercise, especially swimming management team
NON-AMBULATOR • Yearly assessment of gross motor function and plan • Early intervention program
(GMFCS IV, V) • Consider PT/OT, adaptive equipment needs • Experienced cerebral palsy
• Consult with an experienced cerebral palsy management team management team
• Encourage adaptive bicycling or swimming as an opportunity for
aerobic conditioning
Sensory Impairment
HEARING NORMAL • Repeat audiologic assessment regardless of newborn screening results
HEARING ABNORMAL • Refer to ENT/audiology (local/experienced cerebral palsy management • Early intervention program*
team) • School program*
• Coordinate assessment/plan with programs • Parent education
• Consider speech therapy, amplification, sign language • Experienced cerebral palsy
• Refer to experienced cerebral palsy management team as indicated management team
VISION NORMAL • Assess per well-child practice guidelines check acuity and binocularity
VISION ABNORMAL • Referral to ophthalmology (local/experienced cerebral palsy • Early intervention program*
management team) • School program*
• Parent education
• Experienced cerebral palsy
management team
Family Issues
• Ascertain family acceptance
• Parent separation issues – independence of child
• Changes in family lifestyle
• Getting ready for school issues
• Encourage age-appropriate activities
• Beginning peer relations
• Include child in family responsibilities, e.g. household chores
* Annual renewal of prescriptions for needed therapies

* Robert Palisano, Peter Rosenbaum, Doreen Bartlett, Michael Livingston, 2007


AGE 4-6 YEARS
Communication
• Assess/review school program • School program*
• Consider assessment/review plan with the school for augmentative
communication program.
• Assistive technology specialist may be needed
Musculoskeletal
CONTRACTURE • Assess ROM yearly (extremities, back)
CONTRACTURE • Assess ROM yearly (extremities, back) • School program*
PRESENT • Hip/spine X-ray, as indicated • CP specialist consult (local/
• Ask about pain experienced cerebral palsy
• CP team evaluation yearly management team)
Cognition
AGE APPROPRIATE • Assess skills for age/developmental level
IMPAIRED • Review school program • School program*
• Need formal evaluation to accurately determine degree of cognitive • Experienced cerebral palsy
impairment (once in this age period) management team
• Verbal and fine motor impairments may falsely lower scores on many
standard IQ tests
Feeding & Nutrition
ORAL • Assess per well-child practice guidelines • Health Dept.
• Plot weight, length, OFC • Experienced cerebral palsy
• Maintain weight-length ratio at 5-50th percentile management team
• Review drug-nutrient interaction • School program
• Behavioral component
• Consider feeding consult
NON-ORAL Assess at each visit: • Health Dept.
• Review drug-nutrient interactions
• Evaluate feeding, swallowing difficulties
• Ask about pain
evaluation
• Consider behavioral component/oral aversions


AGE 4-6 YEARS
Mobility
INDEPENDENT • Yearly assessment to monitor for possible changing needs
AMBULATOR • Encourage adaptive sports and aerobic exercise
(GMFCS I, II)**
ASSISTED • Yearly assessment of gross motor function and plan for • School program*
AMBULATOR recommendations • Experienced cerebral palsy
(GMFCS III)** • Consider PT/OT, adaptive equipment management team
• Consult with an experienced cerebral palsy team
• Encourage adaptive sports and aerobic exercise, especially swimming
NON-AMBULATOR • Yearly assessment of gross motor function and plan • School program*
• Consult with an experienced cerebral palsy team management team
• Assess potential for power mobility – coordinate with school/cerebral
palsy management team
Sensory Impairment
HEARING ABNORMAL • New onset/changes: refer to ENT/audiology (local/experienced • ENT/audiologist
cerebral palsy management team) • School program*
• Coordinate assessment/plan with school program • Experienced cerebral palsy
• Consider speech therapy, amplification, augmentative communication management team
evaluation
VISION NORMAL • Assess per well-child practice guidelines
VISION ABNORMAL • New onset/changes: refer to ophthalmology (local/experienced • School program*
cerebral palsy management team) • Experienced cerebral palsy
• Coordinate assessment/plan with school program management team
Family Issues
• Address child’s concerns: “Why am I different?”
• Encourage age-appropriate activities: summer camp, Special Olympics, horseback riding
• Encourage family participation in support groups: parents, child, siblings
• Include child in family responsibilities, e.g. household chores
• Specific behavioral concerns

**Robert Palisano, Peter Rosenbaum, Doreen Bartlett, Michael Livingston, 2007


AGE 6-12 YEARS
Communication
• Assess/review school program • School program*
• Consider assessment/review plan with the school for augmentative • Experienced cerebral palsy
communication program; assistive technology specialist management team
Musculoskeletal
CONTRACTURE • Assess ROM yearly (extremities, back) • Orthopedic consult (local/
PRESENT • Hip/spine X-ray, as indicated experienced cerebral palsy
• Ask about pain management team)
• Orthopedic evaluation yearly, as indicated • School program*
Cognition
• Need formal evaluation to accurately determine degree of cognitive • Experienced cerebral palsy
impairment (once in this age period) management team
standard IQ tests
Feeding & Nutrition

• Consider nutrition consult (Health Dept., experienced cerebral palsy
management team)
• Behavioral component
• OT consult (school, experienced cerebral palsy management team)
• Ask about pain
evaluation (experienced cerebral palsy management team)
• Consider behavioral component/oral aversion


AGE 6-12 YEARS
Mobility
INDEPENDENT • Yearly assessment to monitor for possible changing needs
AMBULATOR • Encourage adaptive sports and aerobic exercise
(GMFCS I, II)**
ASSISTED • Yearly assessment of gross motor function and plan for • School program*
AMBULATOR recommendations • Experienced cerebral palsy
(GMFCS III)** • Components of plan: PT/OT, adaptive equipment management team
NON-AMBULATOR • Yearly assessment of gross motor function and plan • School program*
• Assess potential for power mobility – coordinate with school management team
Sensory Impairment
HEARING ABNORMAL • New onset/changes: refer to ENT/Audiology (local/experienced • School program*
cerebral palsy management team) • ENT/audiologist (local/
• Assess compliance with hearing aids as indicated experienced cerebral palsy
management team)
VISION NORMAL • Assess acuity and binocularity • Ophthalmology consult
• Refer to ophthalmology as indicated (local/experienced cerebral
palsy management team)
VISION ABNORMAL • Assess compliance with use of glasses as indicated • Ophthalmology consult
• Refer to ophthalmology as indicated (local/experienced cerebral palsy (local/experienced cerebral
management team) palsy management team)
Family Issues
• Evaluate: Family transportation needs (van/lift)

• Ability to care for child (carrying, bathing, lifting, toileting, etc.)
• Puberty issues (behavioral, social)
• Peer relations
• Social activities (specialty camp, Special Olympics, etc.)
• Beginning discussing sexual issues: birth control, menstruation, self-exploration (possible GYN consult local/experienced cerebral palsy
management team)
• Review: Care providers/sitters should be age/sex appropriate
• Start explicit discussions of planning for transition from pediatric to adult health care, school to work and taking on as much
responsibility for self-management as possible
• Specific issues for the child and family:
* Annual renewal of prescription for needed therapies.



AGE > 12 YEARS
Communication
NONVERBAL • Check hearing if not previously done • School program*
• Assess/review school program • ENT/audiologist (local/
• Consider assessment/review plan with the school for augmentative experienced cerebral palsy
communication program management team)
Musculoskeletal
CONTRACTURE • Assess ROM yearly (extremities, back) • School program*
PRESENT • Hip/spine X-ray, as indicated • Orthopedic consult (local/
• Ask about pain experienced cerebral palsy
• Orthopedic evaluation yearly, as indicated management team)
Cognition
• Learning disabilities and “mild” fine motor problems may impair • Experienced cerebral palsy
achievement without classroom adaptations. management team
standard IQ tests
Feeding & Nutrition

• Behavior component
• Consider clinical feeding consult
• Supplement with calcium (500 mg/day)
• Ask about pain
• Consider nutrition consult, clinical feeding evaluation, or swallow
evaluation
• Consider behavioral component / oral aversion
• Measure 25-hydroxy Vitamin D levels annually
• Supplement with calcium (500 mg/day)


AGE > 12 YEARS
Mobility
INDEPENDENT • Assess/refer for evaluation of driving skills, as indicated • School program*
AMBULATOR • Encourage adaptive sports and aerobic exercise • Rehabilitation center
(GMFCS I, II)**
ASSISTED • Assess/refer for evaluation of driving skills/adaptive equipment, as • School program*
AMBULATOR indicated • Experienced cerebral palsy
(GMFCS III)** • Yearly assessment of gross motor function and plan for management team
recommendations
• Components of plan: PT/OT, adaptive equipment
NON-AMBULATOR • Assess/refer for evaluation of driving skills/adaptive equipment as • School program*
(GMFCS IV, V) indicated • Experienced cerebral palsy
• Yearly assessment of gross motor function and plan management team
• Consider PT/OT, adaptive equipment
Sensory Impairment
HEARING ABNORMAL • New onset/changes: refer to ENT/audiology (local/experienced • School program*
cerebral palsy management team)
• Coordinate assessment/plan with school programs
• Consider speech therapy, amplification, augmentative communication
evaluation with experienced cerebral palsy management team
VISION NORMAL • Assess per well-child practice guidelines
VISION ABNORMAL • New onset/changes: refer to ophthalmology (local/experienced • Ophthalmology consult
cerebral palsy management team) (local/experienced cerebral
• Coordinate assessment/plan with school program palsy management team)
Family Issues
• Review: Family transportation needs (van/lift)

• Ability to care for child (ADLs)
• Sleep issues for the adolescent and caregivers
• Sexual issues: birth control (male and female), exploration, dating, marriage (GYN Consult - local/experienced cerebral palsy management
team)
• Career guidance/vocational
• Care providers/sitters are to be age/sex appropriate
• Long-term living arrangements: group homes, adult foster care, aging parents
• Continue explicit discussions and initiate plans for transition to adult health care.
• Assure family and adolescent consider need for complete or partial adult guardianship and complete process before 18th birthday.
• Prepare a summary of health care history to send to new PCP for adult care.
• Specific issues for the child and family:


III. QUICK CHECK WORKSHEET
Quick-Check Worksheet
NAME: ___________________________________________________________________________________
DOB: ___________________________________________________________________________________
MR #: ___________________________________________________________________________________
Delay/Concern*
Delay/Concern*
Delay/Concern*
Referral/Tx*
Referral/Tx*
Delay/Concern*
Referral/Tx*
Delay/Concern*
Referral/Tx*
Referral/Tx*
WNL
WNL
WNL
WNL
WNL
DATE
Nutrition: Wt: Lt %ile
OFC %ile
*Feeding: Mechanism/Method
Problem
Pulmonary: Cold/Pneumonia
RAD, Otitis/Sinusitis
Hearing
Vision
Milestones: Gross Motor
Fine Motor
Communication
Musculoskeletal: Hips
Spine
Other joints
X-ray done
Safety (age/dev. approp.)
Social/Behavior: Child
Parent
Sibling/s
School Program
Equipment (w/c, power w/c,
feeding pump, suction, walker,
crutches, other)
Splints/Braces (AFO, Hand,
Back)
Skin check
Bowel/Bladder
Medication review
Lab check
*Feeding Mechanism: PO/NG/Gt/Jt
Problem: Vomit/Gag/Choke/Cough
*Referral Options: PHN/Early Intervention Center/School/PT/OT/Speech/Psych/Specialist MD

APPENDIX: REFERENCES AND RESOURCES
Appendix: References and Resources

PROFESSIONAL READING LIST Gorter JW, Rosenbaum PL, Hanna SE, Palisano RJ,
Ashwal S, Russman BS, Blasco PA, Miller G, Sandler Bartlett DJ, Russell DJ, Walter SD, Raina P,
A, Shevell M, Stevenson R, Quality Standards Galuppi BE, & Wood E. (2004) Limb distribution,
Subcommittee of the American Academy of motor impairment, and functional classification of
Neurology, & Practice Committee of the Child cerebral palsy [Review]. Developmental Medicine
Neurology Society. (2004) Practice parameter: & Child Neurology, 46, 461-467.
diagnostic assessment of the child with cerebral Hankins GD, & Speer M. (2003) Defining the
palsy: report of the Quality Standards pathogenesis and pathophysiology of neonatal
Subcommittee of the American Academy of encephalopathy and cerebral palsy [Review].
Neurology and the Practice Committee of the Child Obstetrics & Gynecology, 102, 628-636.
Neurology Society. Neurology, 62, 851-863. Houlihan CM, O’Donnell M, Conaway M, &
Bax M, Goldstein M, Rosenbaum P, Leviton A, Stevenson RD. (2004) Bodily pain and
Paneth N, Dan B, Jacobsson B, Damiano D, health-related quality of life in children with
& Executive Committee for the Definition of cerebral palsy. Developmental Medicine &
Cerebral Palsy. (2005) Proposed definition Child Neurology, 46, 305-310.
and classification of cerebral palsy, April Karol LA. (2004) Surgical management of the lower
2005 [Review]. Developmental Medicine & extremity in ambulatory children with cerebral
Child Neurology, 47, 571-576. palsy [Review]. Journal of the American
Bjornson KF, McLaughlin JF, Loeser JD, Nowak- Academy of Orthopaedic Surgeons, 12, 196-203.
Cooperman KM, Russel M, Bader KA, & Kerr Graham H, & Selber P. (2003) Musculoskeletal
Desmond SA. (2003) Oral motor, communication, aspects of cerebral palsy [Review]. Journal of Bone
and nutritional status of children during
& Joint Surgery - British Volume, 85, 157-166.
intrathecal baclofen therapy: a descriptive
pilot study. Archives of Physical Medicine King S. Teplicky R, King G, & Rosenbaum P.
(2004) Family centered service for children with
& Rehabilitation, 84, 500-6.
cerebral palsy and their families: a review of the
Campbell WM, Ferrel A, McLaughlin JF, Grant literature [Review]. Seminars in Pediatric
GA, Loeser JD, Graubert C, & Bjornson K. Neurology, 11, 78-86.
(2002) Long-term safety and efficacy of
Liptak G.S. (2005) Complementary and alternative
continuous intrathecal baclofen infusion in
therapies for cerebral palsy [Review].
severely disabled children and adolescents with
spasticity of cerebral origin. Developmental Mental Retardation & Developmental
Medicine and Child Neurology, 44, 660-665. Disabilities Research Reviews, 11, 156-163.
Dormans JP, & Pelligrino, L (Eds.). (1998) Caring McKearnan KA, Kieckhefer GM, Engel JM, Jensen
for Children with Cerebral Palsy: A Team MP, & Labyak S. (2004) Pain in children with
Approach. Baltimore: P. H. Brookes. Gilmartin cerebral palsy: a review [Review]. Journal of
R, Bruce D, Storrs BB, Abbott R, Krach L, Ward Neuroscience Nursing, 36, 252-259.
J, Bloom K, Brooks WH, Johnson DL, Madsen Morris C, & Bartlett D. (2004) Gross Motor
JR, McLaughlin JF, & Nadell J. (2000). Function Classification System: impact and utility
Intrathecal baclofen for management of spastic [Review]. Developmental Medicine & Child
cerebral palsy: A multicenter trial. Journal of Neurology, 46, 60-65.
Child Neurology, 15, 71-77. Nelson KB. (2002) The epidemiology of
Goldstein M. (2004) The treatment of cerebral cerebral palsy in term infants [Review].
palsy: What we know, what we don’t know Mental Retardation & Developmental
[Review]. Journal of Pediatrics, 145, S42-S46. Disabilities Research Reviews, 8, 146-150.

Nelson KB. (2008) Causative Factors in Cerebral Winter S, Autry A, Boyle C, & Yeargin-Allsopp M.
Palsy. Clinical Obstetrics and Gynecology, (2002) Trends in the prevalence of cerebral palsy
51(4), 749–762. in a population-based study. Pediatrics, 110,
Nickel, RE. (2000) Cerebral palsy. In Nickel, R.E 1220-1225.
& Desch, L.W. (Eds.), The physicians guide to Yeargin-Allsopp M, Braun KVN, Doernberg NS,
caring for children with disabilities and chronic Benedict RE, Kirby RS, & Durkin MS. (2008)
conditions. Baltimore: P. H. Brookes. Prevalence of CP in the United States in 8-year-
Palisano RJ, Snider LM, & Orlin MN. (2004) Recent old children in three areas. 2002: A Multisite
advances in physical and occupational therapy for Collaboration. Pediatrics, 121, 547-554.
children with cerebral palsy [Review]. Seminars INFORMATION AND ORGANIZATIONS
in Pediatric Neurology, 11, 66-77.
Palisano RJ, Almarsi N, Chiarello LA, Orlin MN, American Academy for Cerebral Palsy
Bagley A, Maggs J. (2009) Family needs of parents and Developmental Medicine
of children and youth with cerebral palsy. Child: www.aacpdm.org
care, health and development, 36, 1, 85-92. Current articles and books about developmental
Palisano, RJ, Rosenbaum, P, Bartlett, D, disabilities for both professionals and families.
Livingston, M. (2007) The Gross Motor Function
ARC of Washington State
Classification System (GMFCS) Expanded and
www.arcwa.org
Revised. CanChild Centre for Childhood
360-357-5596 or toll-free 888-754-8798
Disability Research, McMaster University. http://
motorgrowth.canchild.ca/en/GMFCS/resources/ Advocates for the rights of citizens with disabilities.
GMFCS-ER.pdf Adolescent Health Transition Project
Samson-Fang L, Butler C, O’Donnell M, & American www.depts.washington.edu/healthtr
Academy for Cerebral Palsy Developmental Medi-
A resource for adolescents with special health
cine. (2003) Effects of gastrostomy feeding in chil-
dren with cerebral palsy: an AACPDM evidence care needs, chronic illnesses, physical or
report [Review]. Developmental Medicine & Child developmental disabilities.
Neurology, 45, 415-426. Center for Children with Special
Sanger TD, Delgado MR, Gaebler-Spira D, Hallett Needs www.cshcn.org
M, Mink JW, & Task Force on Childhood Information and resources for families who have
Motor Disorders. (2003) Classification and children with special needs and for professionals
definition of disorders causing hypertonia in
that work with children with special needs.
childhood [Review]. Pediatrics, 111, e89-97.
Shevell MI, Dagenais L, & Hall N and on behalf of the Parent to Parent
REPACQ Consortium. (2009) Comorbidities in www.arcwa.org/parent_to_parent.htm
cerebral palsy and their relationship to neurologic 800-821-5927
subtype and GMFCS Level. Neurology, 72, Find other parents with children with disabilities and
2090-2096. support groups in your area.
Stanley F, Blair E, & Alberman E. (2000) Cerebral
United Cerebral Palsy
palsies: Epidemiology and causal pathways. Clinics
www.ucp.org
in Developmental Medicine: Mac Keith Press.
Information, legal issues, current political topics
Surmana G, Hemmingb K, Plattc MJ, Parkesd J,
Greene A, Huttonb, & Kurinczuka JJ. (2009) and links to relevant organizations.
Children with cerebral palsy: severity and trends
over time. Paediatric and Perinatal
Epidemiology, 23, 513–521.

United Cerebral Palsy of Oregon & BOOKS FOR CHILDREN, AGES 4 TO 8

Southwest Washington Anderson, Mary Elizabeth. (2000). Taking Cerebral
www.ucpaorwa.org/ 503-777-4166 Palsy to School. Plainview, New York: JayJo
or ucpa@ucpaorwa.org Books. ISBN: 1891383086
Washington Parents Are Vital in Education (PAVE) Debear, Kristen. (2001). Be Quiet, Marina! New York:
www.washingtonpave.org Star Bright Books. ISBN: 1887734791
wapave@wapave.org Heelan, Jamee. (2000). Rolling Along: The Story
800-572-7368 of Taylor and His Wheelchair. Atlanta,
253-565-2266 (voice/TDD) Georgia: Peachtree. ISBN: 156145219X
Lears, L. ( ) Nathan’s Wish: A Story about
PERIODICALS
Cerebral Palsy
Exceptional Parent Thomas, P. (2005). Don’t Call Me Special: A First
www.eparent.com Look at Disability. Barron’s Educational Series.
877-372-7368 Willis, J and Ross, T. (2000). Susan Laughs.
READING LIST FOR FAMILIES Henry Holt and Co.
BOOKS FOR CHILDREN, AGES 9 TO 12
BOOKS FOR ADULTS
Berman, Thomas. (1991). Going Places:
Batshaw, Mark L. (2007). Children with Disabilities.
Children Living with Cerebral Palsy (Don’t
Baltimore: P.H. Brooks.
Turn Away). Milwaukee, Wisconsin: Gareth
Blank, Joseph. (1996). Nineteen steps up the Stevens. ISBN: 08636801997
mountain: The story of the DeBolt family. Gould, Marilyn. (1991). Golden Daffodils.
Albany, New York: Harrow & Heaton. Newport Beach, California: Allied Crafts.
Bower, E. (2008). Finnie’s handling the young ISBN: 0201115719
cerebral palsied child at home. Woburn, Meyer, Donald. and Vadasy, Patricia. (1996).
Massachusetts: Butterworth-Heinemann Medical. Living with a brother or sister with special needs.
Geralis, Elaine. (1998). Children with cerebral Seattle: University of Washington Press.
palsy: A parent’s guide. Rockville, Maryland: Nixon, Shelley. (1999). From Where I Sit: Making My
Woodbine House. Way with Cerebral Palsy. New York: Scholastic.
Martin, MS PT (2006). Teaching motor skills to ISBN: 059039584X
children with cerebral palsy and similar
Pimm, Paul. (2002). Living with Cerebral Palsy.
movement disorders: a guide for parents and London: Hodder Wayland.
professionals. Sieglinde Woodbine House, Inc.
Sanford, Doris E. (1992). Yes I Can!
Miller, F. and Bachrach, S. (2006). Cerebral Palsy:
Challenging Cerebral Palsy. Sisters, Oregon:
A Complete Guide for Caregiving. A Johns
Multnomah. ISBN: 0880705108
Hopkins Press Health Book
Turner, L., Lammi. B., Friesen, K, Phelan, N. (2001).
Backward Chaining: A Dressing Workbook
for Parents. CanChild Centre for Childhood
Disability Research. www.canchild.ca/en/
canchildresources/resources/chaining.pdf This
dressing workbook is a helpful tool for parents
and/or caregivers. It is a step-by-step guide on
how to teach children dressing skills.

Funded by the Washington State Department of Health Children
with Special Health Care Needs Program
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Fifth Edition, Revised 5/2011

I. INTRODUCTION TO CEREBRAL PALSY

INTRODUCTION TO CEREBRAL PALSY

Critical Elements of Care: Cerebral Palsy 4

Critical Elements of Care: Cerebral Palsy 5

Critical Elements of Care: Cerebral Palsy 6

Critical Elements of Care: Cerebral Palsy 7

Critical Elements of Care: Cerebral Palsy 8

Critical Elements of Care: Cerebral Palsy 9

GUIDELINES FOR CRITICAL ELEMENTS OF CARE

Critical Elements of Care: Cerebral Palsy 10

Critical Elements of Care: Cerebral Palsy

Critical Elements of Care: Cerebral Palsy 11

Critical Elements of Care: Cerebral Palsy

* Annual renewal of prescriptions for needed therapies.

Critical Elements of Care: Cerebral Palsy 12

Critical Elements of Care: Cerebral Palsy

Critical Elements of Care: Cerebral Palsy 13

Critical Elements of Care: Cerebral Palsy

* Annual renewal of prescriptions for needed therapies

Critical Elements of Care: Cerebral Palsy 14

Critical Elements of Care: Cerebral Palsy

Critical Elements of Care: Cerebral Palsy 15

Critical Elements of Care: Cerebral Palsy

* Annual renewal of prescriptions for needed therapies.

Critical Elements of Care: Cerebral Palsy 16

Critical Elements of Care: Cerebral Palsy

Feeding & Nutrition

Critical Elements of Care: Cerebral Palsy 17

Critical Elements of Care: Cerebral Palsy

• Evaluate: Family transportation needs (van/lift)

* Annual renewal of prescription for needed therapies.

Critical Elements of Care: Cerebral Palsy 18

Critical Elements of Care: Cerebral Palsy

Feeding & Nutrition

Critical Elements of Care: Cerebral Palsy 19

Critical Elements of Care: Cerebral Palsy

• Review: Family transportation needs (van/lift)

* Annual renewal of prescriptions for needed therapies.

Critical Elements of Care: Cerebral Palsy 20

Critical Elements of Care: Cerebral Palsy 21

Appendix: References and Resources

Critical Elements of Care: Cerebral Palsy 22

Critical Elements of Care: Cerebral Palsy 23

United Cerebral Palsy of Oregon & BOOKS FOR CHILDREN, AGES 4 TO 8

Critical Elements of Care: Cerebral Palsy 24

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