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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

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• 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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