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Effective Mobility for Childrenwith Motor Disabilities

What? Why? When? How?

Paradigm Shift in Rehabilitation 3 Traditional Philos o phy

Emerging PhilosophyEffective Mobility: What? 5Effective Mobility: Why? 5

Outcomes: Traditional Approach5

Walking: At What Cost?The Reality of WalkingOutcomes:Restricted Locomotion7

Theories of Motor Developmentand Motor Learning8

Classi cations of Motor Conditions10Gross Motor Functional

Classi cation System Classi cation: Prescribing Wheeled Mobi lity Devices Classi cation: Potential for Independent Walking Model of Service Delivery14

Charlene Butler, EdD

Model of Disablement14 Disability Movement16 Civil Rights Laws17 Availability of Powered Devices18Effective M obility: When? 18 Theory of Child Development19

Importance of Self-Produced Locomotion20 Neuroscience: Developing Mind

and Brain21 Hi Tech Tots22 Wheelchair ToddlersEffective Mobility: How? 24 Assistive Technology24 Outcomes:Powered Mobil ity Conclusions: Powered Mobility Augmentative Mobility29 Service Animals.30Principles of Management 30

Contents

http://www.global-help.org/

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Author: Charlene Butler, EdD

Charlene is a special educator with aunique background of training andexperience in education, child psychology,physical therapy, medicine, assistivetechnology and research. She pioneered

the use of powered mobility by very youngchildren with motor impairments. Herprimary clinical and research interest hasbeen in use of assistive technologyto promote the overall development andachievement of independence of childrenwith cerebral palsy and other motorimpairments.

She was a teacher in a modelprogram for children with motordisabilities for 25 years where she workedin close collaboration with therapists,nurses and a variety of physicians. Shewas a health educator for the Birth DefectsClinic at Seattle Childrens Hospital, and asa consultant to teachers and familiesabout the complex needs of thesechildren.

Charlene has extensive internationalexperience. She networked innovativeideas for the care of disabled children in

13 Mediterranean, African, and SoutheastAsian countries as a Fellow of theInternational Exchange of Experts and

Information of the World Rehabilitation

Fund. She led delegations on childhooddisability to China and India for the Peopleto People Ambassador Program. Sheserved on several editorial boards for

journals published in the US and India.She is a Past President of the

American Academy for Cerebral Palsy andDevelopmental Medicine where she ledthat Academys effort to develop andestablish a methodology suitable forsystematically reviewing interventions forcerebral palsy and other complexdevelopmental disabilities.

Special Acknowledgement

The author wants to especially thank her colleagues, Johanna Darrah, PhD, PT, and LesleyWiart, PhD, PT of the University of Alberta, Canada, for their contribution to the ideasexpressed in this publication.

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Paradigm Shift in Treatmentand Management

No one would disagree that effectivemobility is an obvious and compelling needof all people. Yet, it has not previouslybeen a priority of our management ofpeople who have a childhood motordisability such as cerebral palsy,myelomeningocele, muscular atrophy anddystrophy, arthropgryposis, osteogenesisimperfecta, phocomelia, polio, juvenilerhumatoid arthritis, or an injury-relatedmotor impairment.

Organized efforts to help children withmotor disabilities began just after WorldWar II with the polio epidemic and soonbegan to include children with other motordisabilities. What we now regard as thetraditional rehabilitation approach evolvedduring those first 35 years of treatment.

Traditional PhilosophyTraditionally, these childhood motordisabilities were fundamentally understoodas an impairment of motor developmentand function. The core concept inrehabilitation for these children wasnormalization of movement. The primarygoal of rehabilitation was the acquisition,use, and maintenance of normal movementpatterns with walking as the most widelyand highly valued achievement. Even whenthe prognosis for walking was poor orlimited, primary, if not exclusive, attentionwas given to therapy, casting, bracing,

Effective Mobility for Children withMotor Disabilities

What? Why? When? How?

Last Resort

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surgery, and ambulatory aids, in thehope of eventually achieving someform of walking. Life for the child andfamily revolved around theseinterventions. Walkers, crutches,canes, walking frames, and orthoticswere acceptable aids because they

were walking aids. Whatever level orquality of walking the child achievedwas to be used in all situations. Therewas a belief that if the child did notuse it (i.e. walking), he or she would

lose it. Moreover, it was expectedthat this achieved walking would bemaintained throughout adult life.

Wheelchairs were acceptableonly when all other efforts andtechniques to produce ambulation hadfailed. In other words, wheelchairswere viewed as the last resortratherthan as an aid to locomotion.Moreover,a wheelchair was thought tobe inappropriate for any person at anyage who could walk at all, regardlessof how much of a struggle it was towalk or how long it took to getsomewhere. These concepts hadbecome widely accepted--evenentrenched--by the late 1970s and

framed the traditional philosophy ofpediatric rehabilitation.

However, a paradigm shift isunderway that is changing theemphasis from walking to effectivemobility for these children. ThomasKuhn first used the term, paradigm

shift, in his book The Structure ofScientific Revolutions to describe abasic change in assumptions within aruling theory of science. A paradigmshift is a radical change in thinkingfrom an accepted point of view to anew one, necessitated when newscientific discoveries produceanomalies in the current conceptualview.

Emerging PhilosophyThe paradigm of pediatric rehabilitationhas been shifting from normalization ofmovement to normalization of overallchild development and independence.The goal of rehabilitation is becomingthe achievement of meaningfulfunction and participation in age-appropriate activities and occupationsthroughout life. Meeting this goal

Paradigm Shift

Traditional Paradigm Emerging Paradigm

From motor disability developmental disability

From normalization of motor normalization of overalldevelopment and movement development and independence

From achievement and main- achievement and maintenancetenance of walking of mobility

From remediating impairment bypassing impairment

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depends directly on being able to meetthe required mobility demands.

Effective Mobility: What?Effective mobility is locomotion that isfunctional, timely and energy-efficient.In other words, it is moving easily andindependently from one place toanother. It may include a variety ofwheeled and ambulatory aids thataugment whatever movement a person

may have.

Effective Mobility: Why?

Two conditions need to be present fora paradigm shift to occur. First,evolving practice and research fails tosupport the traditional thinking.Second, there needs to be a criticalmass of people who begin to questionthe traditional assumptions. This iswhat is happening in our thinkingabout mobility for children withchildhood motor disabilities. There have been severaladvances in knowledge from the fieldsof healthcare, education andpsychology as well as in the society atlarge that are responsible for the

paradigm shift from walking to mobility.

First, our clinical experience andscientific studies demonstrated thatthe traditional approach had yieldeddisappointing outcomes.

Outcomes of Traditional Approach

Walking: At What Cost?By the 1980s, studies of energyexpenditure and efficiency had

demonstrated that there are significantphysiologic penalties imposed byabnormal gait. Replicated evidenceled to acceptance of the followingrealities for children and adults.1) When prolonged exercise is

performed at greater than 50% ofan individuals maximal aerobiccapacity, available oxygen isinsufficient to meet the energy

demands of the muscles, and theindividual cannot sustain activitywithout exhaustion.

2) People, with and without motordisabilities, walk at a speed that ismost efficient in terms of energyexpenditure. To maintain thiscomfortable level of energyexpenditure in free walking, motordisabled persons move more slowly.

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3) The more abnormal the gait pattern,the greater the energy expenditureand the slower the speed.

4) Walking with crutches, braces,parapodia, or walkers greatlyincreases energy cost and slowsspeed, regardless of the type of

motor impairment or age.5) Any ambulation aid that increases

effort is likely to be abandoned.6) Wheelchairs allow individuals to

travel at a speed comparable to thatof unimpaired walkers withequivalent energy expenditure.

The magnitude of the physiologicpenalty of abnormal gait is significant.For example, research has shown that

walking in children withmyelomeningocele to be twice asstrenuous as propelling a wheelchair.Children with thoracic and upperlumbar lesion levels who walkedwithout aids worked at maximalaerobic capacity. The ones who walkedwithout orthotic devices or upperextremity aids, had the highest energyexpenditure. Their speed of freewalking wa