Post on 22-Jul-2018
©2011, Shelene Giles. All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise, without prior written permission from the publisher.
Section 7
Pediatrics/Cerebral Palsy
WORKBOOK
Nurse Life Care Planning - Through the Ages
©2011, Shelene Giles. All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise, without prior written permission from the publisher.
Nurse Life Care Planning - Through the Ages Section 7 – Pediatrics/Cerebral Palsy
OBJECTIVE 1: Explain the growth and development stages in a child's life. Understand the impact of a catastrophic
injury/illness in this growth and development process.
OBJECTIVE 2: Explain the classifications of cerebral palsy. Identify levels of impairment based on severity of cerebral
palsy.
OBJECTIVE 3: Describe acute and chronic complications of cerebral palsy. Identify long term treatment and outcomes
of cerebral palsy.
OBJECTIVE 4: Apply and demonstrate the nursing process as a life care planning foundation for a cerebral palsy client.
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Pediatrics
Children are not small adults
Growth and development proceed in a predictable, sequential fashion for all children - individual rate and level of
achievement varies
Height/weight/head circumference - important indicators of health and disease
Children continue to grow & develop (physical, cognitive, social, and emotional)
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Children must acquire mobility and fine motor skills to independently negotiate their environment
Cognitive development progresses from concrete to abstract thinking - ultimately provides for learning and problem
solving
Children develop trusting relationship with parents or primary caregivers, then sibling, and lastly with strangers
Children also learn socially appropriate behavior and culturally acceptable norms
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Positive body image and self-esteem are essential building blocks to healthy emotional development
Play is children's work
Play also helps with anxiety-provoking situations
Involvement in sports and recreation provides exercise
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Impact of chronic illness/disability varies for each child
Effects of disability are similar among children
Differences created among peers
Physical growth and development may be below expected age
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Special services/assistive technology/assistive devices may be necessary for participation and success in school and
recreation
Relationships with family/peers/significant others may be altered
Psychosocial factors may be greater determinants of overall success in life - rather than severity of child's disability
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(HANDOUT - Rehabilitation Nursing, Table 31-1 DISCUSS IN DETAIL)
Impact on Child Development
Infants
Range of motion
Positioning
Pre-mobility skills
Oral motor skills
Developmental stimulation
Seating devices
Orthoses & prosthesis
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Toddlers
Mobility skills
Mobility devices
Assistive devices
Prosthetics & orthotics
ADLs
Communication skills
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Preschool children
Mobility skills and devices
Communication skills
ADLs
Bowel and bladder training
Social interaction skills
Fine motor skills
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School-aged children
Mobility skills and devices
Socialization skills
Communication skills
ADLs
Fine motor skills
Education
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Adolescents
Changes in mobility
Independent living skills
Socialization skills
Prevention of secondary complications
Psychosexual development
Communication skills
Vocational and driving rehabilitation
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Impact of Disability
Children receive ongoing medical care
Medical care and effects of disability cause interruptions in school, social activities, and life in general
Other siblings have positive/negative reactions
Family dynamics/roles change
Children affected by physical, mental, cognitive, social disabilities
Disabled children at higher risk for psychological or social impairments
Transition to school, college, and work are more stressful
Community integration/social activities can be limited
(HANDOUT - Life Care Planning for Pediatric Chronic Pain Patients)
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Overview
Definition - Cerebral Palsy (CP) describes a group of disorders of the development of movement and posture, causing
activity limitation, that are attributed to non-progressive disturbances that occurred in the developing fetal or infant brain.
The motor disorders of CP are often accompanied by disturbances of sensation, cognition, communication, perception
and/or behavior, and/or by a seizure disorder.
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Injury/insult to immature brain - can occur before birth or up to 3 years old
Disorder usually caused by brain injuries that occur early in course of development
Posture and movement disorder
Cause muscles to be rigid/stiff or floppy/weak
Non-progressive
No cure
Leading cause of childhood disability affecting function and development
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(HANDOUT - Cerebral Palsy Fact Sheet)
Incidence
In Europe and United States, CP occurs in 2 - 4 out of every 1,000 births
In 2001, estimated 764,000 people in US living with CP
10,000 infants diagnosed with CP each year
1,200 - 1,500 children diagnosed with CP each year
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Risk Factors
Premature birth
Low birth weight
Breech birth
Multiple babies
Toxic substances
Mother's health
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Etiology
Infection - from mother during pregnancy
German measles (rubella)
Chickenpox (varicella)
Cytomegalovirus
Toxoplasmosis
Syphilis
Meningitis
Viral encephalitis
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Congenital abnormalities
Stroke
Lack of oxygen
Severe jaundice
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Bacterial meningitis
Viral encephalitis
Falls
Hypoxia
Motor vehicle crashes
Child abuse
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Cerebral insult includes vascular, hypoxic-ischemic, metabolic, infectious, toxic, teratogenic, traumatic, and genetic
causes
Cerebral insult alters muscle tone, muscle stretch, reflexes, primitive reflexes, and postural reactions
Other associated/secondary symptoms include mental retardation, vision and hearing problems, and seizures - not part of
definition of CP (secondary diagnosis)
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(HANDOUT - Cerebral Palsy)
(HANDOUT - Hypoxic/Anoxic Brain Injury)
Diagnosis
Insult/injury to brain takes place between prenatal development and age 3
Children typically not diagnosed until after age 1 year
Condition becomes identifiable when child fails to suppress primitive reflexes or fails to meet developmental milestones
Diagnosed by history and physical exam
Child presents with abnormal muscle tone
Hypotonic - more common
Hypertonic - decreased or increased resistance to passive movements
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Diagnostic studies - CT scan, MRI, EEG, ultrasound, lab work
CT scan/MRI can detect treatable conditions - arteriovenous fistula (AV) formation, hydrocephalus, subdural hematoma,
or hygroma
Physicians may also assess for associated disabilities - vision, hearing, seizures, perception problems with touch or pain,
cognitive dysfunction
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(HANDOUT - Cerebral Palsy: Hope Through Research)
Classification
1) Pyramidal/Spastic (80%)
Upper motor neuron involvement
Hyper-reflexia
Extensor Babinski response
Persistent primitive reflexes
Clonus
Muscular hyper tonicity
Overflow reflexes (crossed adductor)
Scissoring gait with toe talking
Tremors
Weakness
Cognitive impairment
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Quadriplegia (10-15%) - affects all 4 extremities, trunk involved
Diplegia (30-40%) - affects legs more than arms
Hemiplegia (20-30%) - affects 1 side (arm & leg), affects arm more than leg
Monoplegia - affects 1 limb
Spastic diplegia - displays scissoring gait due to hypotonia followed by extensor spasticity in legs & muscle imbalance,
little or no functional limitation of upper extremities, delay in developing gross motor skills
Spastic hemiplegia - weak hip flexion and ankle dorsiflexion, overactive posterior tibialis muscle, hip hiking/
circumduction, supinated foot, upper extremity posturing (shoulder adducted, elbow flexed, forearm pronated, wrist
flexed, hand clenched in a fist with thumb in palm), impaired sensation, impaired 2-point discrimination, and/or impaired
position sense, some cognitive impairment (28%)
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2) Extrapyramidal/Dyskinetic/Athetoid (15%)
Extrapyramidal movement patterns
Abnormal regulation of tone
Abnormal postural control
Coordination deficits
Abnormally slow writhing movements of arms/hands and legs/feet
Pseudobulbar involvement - chewing/swallowing/speech difficulties, drooling
Hypotonic at birth with abnormal movement patterns emerging at 1-3 years
Arms usually more involved than legs
Abnormal movement pattern increases with stress or purposeful activity
Muscle tone usually normal during sleep
Intelligence normal
High incidence of sensorineural hearing loss
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3) Ataxic (5%)
Wide-based unsteady gait walk
Tremors affect fine motor skills
Hypotonia muscle tone
Balance and coordination impairment
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Treatment
Goal is attainment of maximal functional ability for children with cognitive and/or physical deficits within the limitations
of their development
Goal of treatment to improve function/capabilities toward independence
Goal to sustain health and promote mobility, cognitive development, social interaction, and independence
Best clinical outcomes - early intervention/management
Treatment depends on specific symptoms
(HANDOUT - Foundations of Developmentally Appropriate Orientation and Mobility)
(HANDOUT - Sensory Development)
_______________________________________________________________________________________
(HANDOUT - Management and Prognosis of Cerebral Palsy)
Requires team approach
Cognitive function of child will impact progression/length/goals of therapies
Play used as rehabilitation tool
Therapy settings - home, private clinic, hospital, school
Frequency of therapies are based on natural developmental process
Address goals on weekly basis & re-evaluation every few months
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0 - 5 years
early childhood intervention
gross motor skills
range of motion
gait/mobility - splints, assistive devices, standers, walkers
home program & equipment
speech - focus on feeding, motor speech disorders, augmentive communication
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5 - 12 years
independence
transition from home to school
mobility (home & school) - walkers, wheelchairs
school therapies initiated
spasticity management
splint/orthotic maintenance
ADL equipment
parent education on transfers and safety
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12 years - young adult
ROM
function
mobility - assistive devices, walkers, wheelchairs
spasticity management
splint/orthotic maintenance
ADL equipment
parent education on transfers and safety
community programs
_______________________________________________________________________________________
(HANDOUT - Adopted Children with Disabilities: What Will Medicaid Pay?)
(HANDOUT - Children with Special Health Care Needs)
Health Care Expenses
Private health insurance
Medicaid
Medicare
State programs
School programs/IEP
Organization/association
Out of pocket
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Nurse Life Care Planning Process
Assessment
Medical records review
Nurse Life Care Plan Assessment
Nurse Life Care Plan Assessment
Musculoskeletal
Neurologic
Respiratory
Cardiovascular
Integumentary
Gastro - incontinence/program
Urinary - incontinence/program
Psychosocial
FIM-FAM
Bathing/showering/hygiene
Grooming
Dressing
Feeding
Mobility
Transportation
Living arrangements
_______________________________________________________________________________________
Nursing Diagnosis
Activity intolerance
Fatigue
Sleep pattern disturbance
Altered nutrition
Impaired swallowing
Pain
Ineffective airway clearance
Risk for aspiration
Risk for falls
Altered health maintenance
Caregiver role strain
Impaired verbal communication
Community coping, ineffective
Altered family processes
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(HANDOUT - Guidelines for the Care of Children and Adolescents with Cerebral Palsy)
Outcomes
Collaboration
Developmental Specialist/Physiatrist
Physicians
Therapists (OT, PT, speech, nutrition, cognitive, assistive technology, psych)
Home health providers
Equipment vendors
_______________________________________________________________________________________
(HANDOUT - Ohio Standards of Care)
(HANDOUT - Critical Elements of Care)
Medical Research
Early intervention & multi-disciplinary/team approach - best outcome
Clinical Practice Guidelines/Standards of Care
American Academy of Pediatrics (aappubiclations.org/endorsed_practice_guidelines/index.dtl)
Royal Children's Hospital/Clinical Practice Guidelines (rch.org.au/clinicalguide)
American Speech-Language-Hearing Association/Cerebral Palsy Guidelines (asha.org)
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Chronic Complications Growth & development delays
Impaired oral motor functions
Persistent primitive reflexes
Disorder of muscle tone
Abnormal neurological control
Impaired sensation to touch
Impaired sensation/perception of pain
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Impaired vision
Nystagmus
Strabismus
Hemianopia
Cortical blindness
Retinopathy of prematurity
Impaired hearing
Gastrointestinal
GERD
Vomiting
Constipation
Bowel obstruction
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Pulmonary
Seizures
Psychological disorders
Osteopenia/osteoporosis
Scoliosis
Higher risk for fracture
Hip subluxation/dislocation
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Spasticity/contractures
Chronic pain
Urinary incontinence
Cognitive impairment
(HANDOUT - Intellectual disability in children: Management, outcomes, and prevention)
Decubitus ulcers
(HANDOUT - Aging and Cerebral Palsy)
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(HANDOUT - AANLCP Journal - Determining Costs for a Pediatric Patient with Cerebral Palsy: Case Study)**
Planning
Treatment Recommendations in Nurse Life Care Plan
Medical
Physician appointments/evaluations
Developmental Specialist/Physiatrist - sees pediatric specialist until age 18-21, then transition to physiatrist
Pediatrician - local care
Musculoskeletal
Neurological
Genitourinary
Gastrointestinal
Cardiovascular
Respiratory
Integumentary
ENT
Audiology
Ophthalmology
Dentist
Psychiatry
Psychology
_______________________________________________________________________________________
Surgeries/Procedures (invasive vs. non-invasive)
Selective dorsal rhizotomy
Tendon lengthening
Adductor release
Hamstring transfers
Achilles release
Posterior tibial tendon transfer
Osteotomy
Fusion
_______________________________________________________________________________________
(HANDOUT - Life Care Planning for the Client with Severe Spasticity: Intrathecal Baclofen Therapy)
(HANDOUT - ITB Commonly Billed Codes)
Intrathecal Baclofen pump
Botox injections - upper extremity, serial casting/splinting, PT
Phenol injections - lower extremity, serial casting/splinting, PT
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Hospitalizations
Pneumonia
Prolonged seizure
Decubitus ulcers
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Therapeutic Evaluations
OT
PT
Speech/language
Developmental/cognitive
Neuropsychological
Nutrition
Recreational
Psychological
_______________________________________________________________________________________
(HANDOUT - Effect of Physiotherapy on Children with Cerebral Palsy)
HANDOUT - Prescribing Therapy Services for Children with Motor Disabilities)
Therapeutic Modalities
OT
PT
Recreational
Play
Hippo - horseback (narha.org)
Aquatic
Neurodevelopmental (ndta.org)
Speech/language
Nutritional
Psychological (individual & family)
Alternative
Sensory integration
Conductive therapy
Hyperbaric oxygen
Constraint inducted movement
Craniosacral massage
Acupuncture
Biofeedback
Electrical stimulation
Cerebral stimulator
Nutritional supplements/mega vitamins
Once child has plateau in formal therapy - transition to school/community/home programs for maintenance
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Reasons to restart therapy
Intervene with status change
Update home program
Evaluation intermittently for changing equipment needs
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Diagnostic Studies
Neurological - brain MRI, EEG, EMG/NCV studies
Musculoskeletal
Spine x-rays during growth years - scoliosis
Hip x-rays during growth years - subluxation/dislocation
Secondary diagnosis/complications/injuries
Respiratory
Chest x-ray and pulmonary function tests with aspiration pneumonia & oral motor impairment
Genitourinary
Gastrointestinal
Lab Work
Comprehensive metabolic panel
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Medications Oral antispasmodics
Diazepam (Valium)
Baclofen (Lioresal)
Dantrolene sodium (Dantrium)
Injectable antispasmodics
Phenol
Botox
Anti-convulsants - seizures
Gabapentin (Neurontin)
Lamotrigine (Lamictal)
Oyxcarbazepine (Trileptal)
Topiramate (Topamax)
Zonisamide (Zonegran)
Anti-cholingerics - dystonic/uncontrollable body movements or frequent drooling
Benztropine mesylate
Carbidopa-levodopa (Sinemet)
Glycopyrrolate (Robinul)
Procyclidine hydrochloride (Kemadrin)
Trihexyphenidyl hydrochloride
Stool softeners/laxative - constipation (Cerebral Palsy: Medications, 2008)
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(HANDOUT - Gastrostomy Feeding in Children with Cerebral Palsy)
(HANDOUT - Feeding and Gastrointestinal in Children with Cerebral Palsy)
(HANDOUT - Overview of Parenteral and Enteral nutrition)
(HANDOUT - Reimbursement for Foods for Special Dietary Use)
Medical Supplies
Nutrition
Respiratory
Bladder program
Bowel program
Skin care
Wound care/dressing changes
_______________________________________________________________________________________
Orthosis
Spine (TLSO - thoracolumbar sacral orthosis)
UE splints (WHO - wrist hand orthosis)
LE splints (HASO - hip abduction spinal orthosis) (AFO - ankle foot orthosis)
Most orthosis customized - allow for OT evaluation/re-evaluation for replacement
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(HANDOUT - Evaluation of Computer-Access Solutions for Students with Quadriplegic Athetoid Cerebral Palsy)
(HANDOUT - Prescribing Assistive-Technology Systems: Focus on Children with Impaired Communication)
Purpose of DME - promote learning and functioning, kitchen/bathroom/bedroom safety for client & caregiver, therapy,
and ADLs
Durable Medical Equipment/Aids for Independent Function
Specifics of DME is dependent on severity of CP, level of physical/functional ability, and secondary issues related to CP
Examples of DME - DME to consider at younger age
Bath chair
Booster seat
Modified high chair
Wedges/pillows
Adaptive clothing
Modified eating utensils
Modified writing utensils
Communication aids
Standing frame
Therapy table
Therapy chair
Therapeutic equipment
Therapeutic toys/games
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Play is vital part of childhood - include selected toys/games to promote functioning, learning, and safe play
DME to consider at older age
Standing frame
Hospital bed vs. electric bed & mattress/overlay
Patient lift (manual vs. electric)
Transfer bench
Shower chair
Elevated toilet seat with rails
Adaptive clothing
Modified eating utensils
Modified writing utensils
Household aids
Communication aids
Assistive technology (Rehabilitation Engineering and Assistive Technology Society of North America - resna.org)
______________________________________________________________________________________
Mobility
Most children achieve maximum level of gross motor function by age 6-7 years
Many CP children can walk, but have poor balance and at high risk for falling/injury
Consider mobility aids for short and long distance ambulation
Specialized stroller
Walker
Customized manual wheelchair - customized required due to body structure/poor muscle control
Power assist wheelchair
Power wheelchair - consider ability to operate (cognitive & fine motor coordination)
Wheelchair maintenance/replacement
Wheelchair accessories
0 - 5 years
Mobility equipment re-evaluation every 3 months
Replacement as needed/more frequent (yearly) (due to growth/development)
Consider postural support
Specialized strollers (until 18 months - then place in wheelchair)
Gait trainer
Stander
Front-wheel drive wheelchair
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5 - 12 years
Mobility equipment - re-evaluation every 6 months
Replacement every 3 years
Gait trainer
Stander
Lightweight wheelchair
Tilt-in-space wheelchairs with modification
Power wheelchair
Attempts to promote independent mobility
13 years - young adulthood
Mobility equipment - re-evaluation yearly
Replacement every 5-7 years
Stander
Rigid wheelchairs
Power wheelchair
Custom molded seating system
_______________________________________________________________________________________
(HANDOUT - Financing of Pediatric Home Health Care)
(HANDOUT - Providing a Primary Care Medical Home for Children and Youth with Cerebral Palsy)
Non-medical
Home care/living arrangements
Most mainstream child care centers lack staff that are adequately trained or experienced in care of disabled child
Mothers opt to stay home from work and care for their child
Depending upon severity of CP, children will transition to school or continue homebound
Parents need relief from caring for child for special healthcare needs
Consider level of care/hours of care/duration/respite/long term options (@ age 21 - live in vs. residential)
Present options (present pros & cons)
Option 1: family home setting thru LE (consider parents at retirement age)
Option 2: family home setting thru age of parent retirement, then transition to supervised residence/group home
Option 3: family home setting thru completion of school, then transition to group home
Option 4: family home setting thru young childhood, then transition to group home
Respite in family home setting - consider parents being parents to their child
Be familiar with state Nurse Practice Act - which determines/designates skilled and unskilled care
Skilled (RN or LPN) - medications, catheterizations, wound care/dressing changes
Unskilled (Certified Nursing Assistant/Home Health Aide, Personal Care Attendant, or Companion) - bathing/showering,
hygiene, grooming, dressing, feeding, cooking, cleaning, transportation, errands
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Architectural renovations - major home modifications should begin around age 10-11 years old
Barrier free
Wheelchair accessible design
Assistive technology
OT home evaluation
Contractor home evaluation
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Transportation
Wheelchair accessible transportation
Private vs. public transportation
Private - large vehicle/minivan, then transition to full size van with modifications
Vehicle modifications/maintenance/repair
Handicap parking permit
Public - ability to communicate, cognitive thinking to navigate community, escort/home health aide
Children tend to have multiple therapy appts each week
Transferring in/out of vehicle - strain on family member/caregiver
Safe transportation - specialized car seat vs. wheelchair tie down (safer to sit in vehicle seat - instead of wheelchair)
Out of town travel expenses
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(HANDOUT - Definitions of Specific Learning Disability and Laws Pertaining to Learning Disabilities)
(HANDOUT - Navigating the Special Education Maze for Children with Medical Disabilities)
Educational/Vocational
Education
Individuals with Disabilities Education Act (IDEA)
Special education defined as specially designed instruction at no cost to parents to meet the unique needs of a child with a
disability
Instruction conducted in public school classrooms, private special education schools, state schools, in home, in hospitals,
skilled nursing facility, and other facilities
Special education - can begin with infants/toddlers experiencing developmental delays, physical or medical conditions
which have high probability of developmental delay, or at-risk infants/toddlers
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Special education services - nursing services, family training/counseling, special instruction for care,
speech/language/audiology/vision, OT, PT, psychological counseling, behavior intervention, services coordination, 1:1
assistant, medical services for diagnostic & evaluation purposes, early screening/assessment services, social work
services, assistive technology services/devices, transportation & related costs to receive services, and vocational
rehabilitation (any other services deemed to meet the needs of the child)
Individualized Family Services Plan (IFSP)
Individual Education Plan (IEP) - yearly review of IEP, school/therapists/counselor/school nurse/parents involved,
reassessment every 3 years
School therapies - focused on learning/functioning & barrier free environment while in school
Home therapies - focused on ADLs
Vocational
Vocational evaluation - sheltered vs. competitive employment
Vocational case management
Vocational modifications
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(HANDOUT - Promoting the Participation of Children with Disabilities in Sports, Recreation, and Physical Activities)
Other
Case management - implementation/evaluation of nursing process
Support group - CP associations
Summer camp
Fitness - gym vs. home
Recreational modifications
Guardian/conservator
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