effective assessment and treatment of children with
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The Continuing Education You Want. Quality Content, Live Near You, or Online 24/7/365
Children with Severe ImpairmentsEffective Assessment and Treatment of Children with Medically Complex DiagnosesPresented by Jacqueline Grimenstein, PT, C/NDT, CKTP
Treatment Solutions for
Disclosures• Guidelines exist whereby all speakers must disclose any relevant relationships. All relevant relationships are published in the
workshop brochure.
• Summit Professional Education does not accept commercial support of any kind.
• Approvals of this activity refer only to continuing education activities and do not imply that there is real or implied endorsement of any product, service, or company referred to in this activity nor of any company subsidizing costs related to the activity.
• You will be notified if a presentation relates to any product used for a purpose other than that for which it was approved by the U.S. Food and Drug Administration.
• FINANCIAL: Jaqueline Grimenstein is compensated by Summit as an instructor.
• NONFINANCIAL: Jaqueline Grimenstein is a Board member of the Neuro-Developmental Treatment Association and is an active member of the Kinesiotaping Association. She receives product samples from Fabrifoam, Inc and Spio, Inc in return for promoting their products.
Workshop Notes
Workshop Notes
Workshop Notes
Treatm
ent o
f the
Child with
Severe Im
pairm
ents
Jacque
line Grim
enstein, PT, C/NDT,
CKTP
jgrim
enstein@
gmail.com
1
Introd
uctio
n
•What d
efines a child with
severe im
pairm
ents
•Treatin
g children with
severe im
pairm
ents presents
a un
ique
challenge to se
t goals that are both
realistic and
optim
istic
•Our ro
le is to
assist th
e child
to fu
nctio
n with
in th
efamily and
com
mun
ity and
assist th
e family to
nurture and care fo
r the
ir child
2
Use of C
lassificatio
n System
s
•Gross M
otor Fun
ction Classification System
•Manual A
bilities C
lassificatio
n System
•Co
mmun
ication Functio
n Classification System
•Eatin
g and Drinking
Ability Classification System
Levels IV and
V of e
ach system
en
compasses involvem
ent
3
Gross M
otor Classificatio
n System
for
Cerebral Palsy
Level IV: se
lf‐mob
ility with
limita
tions; children are transported
or use pow
er m
obility fo
r outdo
ors
i.e. age 2‐4: children flo
or sit w
hen placed
, but canno
tbalance or use hands fo
r sup
port; frequ
ently
requ
ire adaptive
seating and aids fo
r stand
ing; m
ay ro
ll, creep
on be
llyLevel V: self m
obility is se
verely limite
d even
with
assistive
techno
logy i.e. age 2‐12: re
stricted voluntary control to maintain
antig
ravity head and trun
k po
stures; n
o means of ind
epen
dent
mob
ility, excep
t maybe
with
a pow
er whe
elchair
Palisano, et a
l. McM
aster U
niversity, H
amilton
, Ontario
Dev Med
Child Neurology, 39.21
4‐22
3, 199
7; www.canchild.ca
4
11
GMFCS
5
The Manual Classification System
• Level IV: handles a limited selection of easilymanaged objects in adapted situations;limited success with assistance of adaptiveequipment
• Level V: does not handle objects and hasseverely limited ability to perform even simpleactions; needs total assistance
Eliasson AC, et al. Dev Med and Child Neurology; 2006; 48: 549‐554.www.macs.nu
612
Level V:
Does not handle
objects a
nd se
verely
limite
d ability to
pe
rform even sim
ple
actio
ns. Req
uires total
assistance.
7
Supp
lemen
tary M
ACS Level Ide
ntificatio
n Ch
art
To be used
together with
the MAC
S leaflet
Does th
e child
handle most k
inds of o
bjects inde
pend
ently
?
Does th
e child
perform
even difficult
manual tasks with
fair speed and accuracy
and do
es not need to use alte
rnative ways
of perform
ance?
Level I:
Hand
les o
bjects
easily and
successfully. At
most lim
itatio
ns in
the case of
performing manual
tasks req
uirin
g speed and accuracy.
Level II:
Hand
les m
ost o
bjects
but w
ith so
mew
hat
redu
ced qu
ality
and/or sp
eed of
achievem
ent. May
avoid some tasks o
r use alternative ways
of perform
ance.
Does th
e child
perform
s a num
ber o
f manual
tasks w
hich com
mon
ly need to be adapted or
prep
ared
, and
help on
ly neede
d occasio
nally?
Level III:
Hand
les o
bjects
with
difficulty,
need
s help to
prep
are and/or
mod
ify activities
Does th
e child
hand
le so
me easy
to handle ob
jects if
freq
uently
supp
orted?
Level IV:
Hand
les a
limite
d selection of easily
mange objects in
adapted situatio
ns,
requ
ires c
ontin
uous
supp
ort.
Yes Ye
sYes
Yes
No
No
No N
o
Field Trial Versio
n, www.m
acs.nu
13
The Communication Function Classification System
• Level IV: Inconsistently sends and/or receives (communication) even with familiar partners
• Level V: Seldom effectively sends or receives (communication) even with familiar partners
Hidecker et al. Dev Med and Child Neurology. 2011, 53: 704‐710www.cfcs.us
8
914
The Eating and Drinking Ability Classification System
• Level IV: Eats and drinks with significant limitations to safety
• Level V: Unable to eat and drink safely – tube feeding may be considered to provide nutrition
Seller, et al. Dev Med and Child Neurology, 2014; 56: 245‐251www.sussexcommunity.nhs.uk
10
15
11
Eatin
g & Drin
king
Ability Classification System
–Algorithm
Is th
e individu
al able to
swallow fo
od and
drin
k with
out risk
of a
spira
tion?
Yes
Istheindividu
alableto
bite
andchew
onhard lumps of
food
with
out a
risk of
choking?
Yes
Istheindividu
alableto
eat
amealinthesametim
eas
peers?
Yes LevelI
Eats and
drinks sa
fely
and
efficiently
No
LevelII
Eatsand
drinks
but
with
some
limita
tions
toefficiency
No
Canrisks
ofaspiratio
nbe
managed
toelim
inatehard
totheindividu
al?
No
LevelIII
Eatsand
drinks with
some
limita
tions to
safety; the
re
maybe
lim
itatio
ns to
efficiency
Yes LevelIV
Eatsand
drinks with
sig
nificant
limita
tions to
safety
No
LevelV
Unableto
eat
ordrink
safely–tube
feed
ingmay
beconsidered
toprovide
nutrition
www.sussexcom
mun
ity.nhs.uk
16
Purpose of These ClassificationSystems
• Provide general level of functioning for all whoare involved in the care of a child with neurologicimpairments or similar disabilities.
• Do not and cannot address participation• Are measures of usual performance (not bestperformance) on a daily basis
• Information gathered help guide intervention,planning, goal setting and prognosis for function
• For research purposes – group children fordescription and stratification
• May be used to assist administrators and payersallocate resources
12
The Evaluation Process
• ICF Model – Looking at the whole picture
• Evaluating by system
• The role of standardized testing
13
The NDT/Bobath (Neuro DevelopmentalTreatment/Bobath) Approach
NDT is a holistic and interdisciplinary clinical practice model informedby current and evolving research that emphasizes individualizedtherapeutic handling based on movement analysis for habilitation andrehabilitation of individuals with neurological pathophysiology. Thetherapist uses the International Classification of Functioning, Disability,and Health (ICF) model in a problem solving approach to assess activityand participation, thereby to identify and prioritize relevant integritiesand impairments as a basis for establishing achievable outcomes withclients and caregivers. An in depth knowledge of the human movementsystem, including the understanding of typical and atypicaldevelopment, and expertise in analyzing postural control, movement,activity, and participation throughout the lifespan, form the basis forexamination, evaluation, and intervention. Therapeutic handling, usedduring evaluation and intervention, consists of a dynamic reciprocalinteraction between the client and therapist for activating optimalsensorimotor processing, task performance, and skill acquisition toenable participation in meaningful activities.
14
IndividualFunctionaldomain
SocialDomain
Body structure and function
Contextual Factors
15
International Classification ofFunction
16
ICF Domains
• Pathophysiology
• + contextual factors
• Participation
• Functional Activities
• Family Goals
• contextual factors
• Participation Restrictions
• Functional Limitations
17
17
Pathophysiology
• Underlying medical condition or injury thatinterrupts or interferes with normalphysiological and developmental processes inany dimension of the individual.
18
Family Functional Goals
• What outcome will benefit the family as awhole and the child specifically
• Ask family what functional activity will helpthem in the care of their child or what taskwould they like the child to do better
• Ask child, if appropriate, what he/she wouldlike to change or do that he/she cannot duecurrently
19
Contextual Factors
• Extraneous factors surrounding the child andfamily that may influence the outcome of thetreatment program either positive or negative
20
Participation
• What age appropriate activities within thefamily or community can the child take part inor is excluded from due to his/her limitationsand how much assistance or support doeshe/she need to be a functional member ofsociety
21
Functional Activities/Limitations
• In this section look at what the child can orcannot do.
• Examples of positive activities may include:can walk, can talk, can eat, etc.
• Limitations can include: cannot transition,cannot feed self, cannot dress self, needsassistance with transitions
22
Neuroplasticity:
Research by Jeffrey Kleim:• Only relevant tasks will induce placticity• In an intact neuro system it takes around 2000repetitions to make changes the motor map• Motor map represents skill efficiency• Need 500 repetitions to learn a skill and 5000to unlearn
23
18
Lab – Looking at Early Development
• How does a typical baby develop head andtrunk control
• Video of typical development
24
Video Treatment of the RespiratorySystem
25
Lab: Focus on the Core• Insufficient anti gravity trunk control/poor headcontrol
• Can the child activate and sustain muscle activity
• What affects do you see on the respiratorysystem
• Treatment strategies for treating the respiratorysystem
26
OGANIZATION OF MOTORBEHAVIOR
Systems Approach
27
Interaction of the Individual, theEnvironment and the Task
• Want the child to perform at his absolute bestwithin his disability
• Subsystems are plastic and adaptive to bothinternal and external changes
• The environment includes everyone the childcomes in contact with on a regular basis
• Initially focus on completion vs quality ofcomponent movements
28 29
19
How does this fit with the child withsevere impairments
• Since children in the level IV and Vclassifications do not fit the norm of ourevaluation process how do we go aboutlooking at the systems
• Primarily want to look at how the varioussystems are equipped to support basic lifefunctions; breathing, state regulation, heartrate, sensory system, awake/asleep cycles andfeeding and digestion
30
System Integrity/Impairments• Neuromuscular– Recruitment of postural muscles
• Can the child initiate muscle activity – What groups, in whatpositions; through gravity or against gravity
• Do they over recruit to initiate movement
– Selective control of muscles – can they use anyisolated movement patterns for function or whatmuscle groups are used together
– What happens when the child attempts a movementpattern
31
• Describe variety of movement synergies invarious postures – can the child only perform atask in a certain position
• Describe issues of postural alignment includingcenter of mass and base of support and how thetwo interact – what does their overall alignmentlook like in various postures
• Describe tone and levels of stiffness
32
Posture and Movement• Define issues with the posture and movementsystem that provide barriers to achievingfunctional, quality movement
• Look at postural strategies to achieve movement
• Levels of stiffness
• Movement is organized around function
33
• Sensory System– Vision: Does the child have functional vision?What tells you how they are using any vision
– Hearing: Is hearing intact? Does the child respondto voice or other stimuli?
–Which sense does the child use most efficientlyand reliably to give and receive information
– Does the child respond best when information ispresented to one system or paired with 2 systems(sound and light; deep pressure with rhythmicmovement
34
–Modulation of awareness state level of excitementand how it affects muscle control
– How does the child respond to touch• Change is respiratory rate• Increase tone, smiling, vocalization
–What’s happening with the vestibular system• Does the child tolerate movement through space• What is the response to rocking – does the child preferone direction over the other
35
20
• Musculoskeletal system– Range of motion
– Planes of movement can child move in morethan one plane
– Can the child move against gravity, which bodyparts and for how long
– Oral motor control how does the child handlesaliva, any jaw clenching, controlled tonguemovements
36
• Respiratory– Can the child breathe on their own or requiremechanical ventilation• Requires tracheostomy• Full time; during sleep, during activities• Require O2
– Rib cage mobility
– Breath/swallow coordination
– Depth of respirations
– Controlled exhalation during talking or vocalizations37
• Skin– Color and temperature with prolonged positioning
– Scarring• Where are scars located?• If on trunk do they impede movement of the trunkduring respiration
– Tightness in skin• Does it interfere with movement or ADL’s
38
• Cardio vascular– Heart rate – what happens in new positions ortrying new pieces of equipment
– Signs of stress with unfamiliar handlers –increased heart rate, respiratory rate or drop in O2SAT’s
– Thermo regulation –• stability in temperature and color in head, trunk andlimbs in different positions or in various pieces ofequipment• color changes in extremities• Profuse sweating or always cold
39
• Regulatory/Arousal– Other signs of stress: skin flushing, pupil dilationor constriction, sweating, vomiting
– Does the child take any medication that can affectalert or sleep states
–What is the child’s awake/asleep patterns, doesthe child shut down with stimulation
– Arousal state in newborns according to Brazelton• Deep sleep Active sleep• Quiet alert Active alert• Active crying Drowsiness
40
Cognition• Children with severe impairments can have acognitive levels ranging from gifted toprofoundly impaired
• Has the child had formalized cognitive testing• If tested what accommodations were used ifany
• It’s not always about IQ• How does the child let you know he/she is “inthere”; what stimuli do they respond to
41
21
Hierarchy of Cognitive SkillsGellert and Pulaski (2014)
• Arousal – focused alertness• Attention – brief active on relevant and meaningfulstimuli selective alternating/divided attention
• Memory – storing and retrieving (declarative andprocedural)
• Reasoning – comparing/contrasting scenarios inthoughts
• Problem solving – identifying and solving• Executive functions – initiation, planning, organization,time management, self regulation, self monitoring, anderror correction
42
Digestion• Digestion/Elimination– Bowel and bladder patterns– Any reflux or issues with gas and cramping– How is the child fed and how often– How long does it take to feed the child or assistwith feeding
–Who is able to feed the child– If tube fed any issues with gastric emptying– Height and weight
43
• Hormones– Has the child reached puberty– For females any issues with menstrual cycle– Issues with masturbation– Changes in personality
44
Role of Standardized Testing
• Usually required in documentation• Norm referenced testing: e.g. Bayley, Peabody,Alberta Infant Motor Scale– Only measure if the child falls within the range ofnormal
– Diagnostic use only– For this population you will not be able todocument change in function
45
• Criterion referenced testing: Somewhat betteras can measure levels on the ICF, but still oftennot sensitive enough to measure change inthis population– TIMP – Test of Infant Motor Performance (34weeks 4 months): sensitive to at risk babies and tointervention changes
– COPM – Canadian Occupational PerformanceMeasure shows some sensitivity to children withdisabilities
46
– The Assessment for Persons Profoundly orSeverely Impaired – an assessment tool for peopleof any age who are preverbal and whose mentalage would fall below the 8 month level in typicallydeveloping children. It determines clientpreferences for visual, auditory and tactile stimulifor social interaction and methods ofcommunication
47
22
– The Adapted Sequenced Inventory ofCommunication Development – assesses thecommunication skills in adolescents and adultswho have little or no speech or are understood byonly a few people. Receptive and expressive skillsare measured separately
– The Test of Early Communication and EmergingLanguage – (the 2011 revision of the NonspeechTest): designed for both assessment andintervention planning
48
Other Possible Tests
• GMFM – Gross Motor Function Measure – ameasure of gross motor activity designed tomeasure change in children with CP ages 5months to 16 years who function below theskills of a typically developing child of 5 yearsof age. Free software from CanChild(canchild.org) is available for scoring– 2 versions – 88 scoring items or shorter version 66
49
GMFM
• GMFM 88– provides more descriptive information aboutmotor function for very young children or childrenwith more complex motor disability such as thosefunctioning in GMFCS level V as it has more itemsthat describe early motor skills.
• GMFM 66– Takes less time to administer– Items are listed in order of difficulty
50
• HRQoL – Health Quality of Life surveys areusually filled out by families and can assist theclinician in measuring how health statusrelates to perceived quality of life. Thisinformation may help the clinician understandthe burden of care and direct goal setting.These HRQol surveys usually measureparticipation domain of the ICF
51
• SATCo – Segmental Assessment of Trunk Control– allows the clinician to determine the segmentof the trunk that had and does not have controlin order to be more specific with intervention.The child’s level is assessed statically, activelywith anticipatory control and reactively. Researchshows that SATCo scores and age predict GMFMscores (Curtis et al, 2015) and correlate well withGMFCS Levels IV and V descriptions (Saavedraand Wollacott, 2015) The SATCo measures thebody structures and functions domain of the ICF
52
23
SATCo
53
Goal Setting
• Difficult to set standard goals within realistic time frames
• Primary goal is to determine what is most important to the child and family in assisting with functional activities and ADL’s
• May want to use Goal Attainment Scaling to set goals and make them achievable
5424
Goal Attainment Scale (GAS)
• Goals from GAS can be statistically analyzed (McDougall and King 2007)
• Scale is set up on a 5 point scale with ‐2 being current level and 0 being expected outcome
+2
+1
0
‐1
‐255
Goal Attainment Scale (GAS)• Goals from GAS can be statistically analyzed
(McDougall and King 2007)
• Scale is set up on a 5 point scale with ‐2 being current level and 0 being expected outcome
+2 Will be able to bear weight on both legs to assist with a stand pivot transfer+1 Will hold onto caregiver and lean forward to initiate weight shift during transfer0 Will reach out with both arms to caregiver to assist with transfer‐1 Will initiate upright posture at beginning of transfer from wc‐2 Requires maximum assistance to transfer from wheelchair
56 25
Examples of Goals/Outcomes in School
• Child will eat a lunch consisting of pureed food atschool each day within a 30 minute time periodin the lunchroom with any one of the schoolaides feeding him.
• Child will respond to her/his name being called inthe classroom with the teacher standing within 5feet of the wheelchair by opening eyes
• Child will sit in his/her wheelchair positioned inits most upright position to attend to a visualcomputer learning activity for 15 minutes
57
Sample Goals Continued
• Child will consistently move his/her arm uponrequest in a random pattern to make a markon a paper using an adapted marker during arttime in the classroom
• Child will consistently say two one syllableword approximations to indicate he wants toturn on his laptop
58
Frequency and Duration of Treatment• Look at areas of ICF to determine which areawill have the most impact from treatment
• Determine treatment model– Intensive: 3 11 x per week–Weekly/bimonthly: 1 2 x per week to every otherweek
– Periodic: Regularly scheduled intervals– Consultative/monitoring: Parent or therapistrequest
• Identify amount of time needed to achieve setgoals based on frequency
59
Treatment Strategies
• Alignment – what boney limitations orcontractures interfere
• Treatment strategies for increasing range ofmotion and strength
• Focus on weight bearing, transfers andtransitions
60
Lab Increasing Range of Motion
• Myofascial work
• Use of rotation and shaking
• Elongation versus stretching
61
Home Programs
• What can the child do on their own?
• What is the role of the family
• What is a realistic home program for thispopulation
62
26
The Treatment of the Child with Severe Impairments
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Any opinions, findings, recommendations or conclusions expressed by the author(s) or speaker(s) do not necessarily reflect the views of Summit Professional Education. This publication is designed to provide accurate and authoritative information in regard to the subject matter covered. It is sold with the understanding that the publisher is not engaged in rendering legal, accounting or other professional service. If legal advice or other expert assistance is required, the services of a competent professional person should be sought.
© Copyright 2019 Jacqueline Grimenstein & Summit Professional Education. No part of this workbook may be reproduced in any manner without the expressed written consent of Instructor/Credentials and Summit Professional Education.
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Workshop Manual ID: 6238
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