Occupational Therapy and children with

Neuromuscular disorders

Sarah WattsOccupational Therapist Neuromuscular ClinicRoyal Children’s Hospital

Megan O’ConnorOccupational Therapist Eastern Specialist ServicesScope

Outline

TransitionsFunding & Equipment

Case Studies

Foundations & Collaboration

Foundations & Collaboration

• Promoting health and well being through occupation. 

• The primary goal: to enable people to participate in the activities of everyday life. (WFOT)

Foundations & Collaboration

• The purpose of science is not to analyze or describe but to make useful models of the world. A model is useful if it allows us to get use out of it.

Edward De Bono

Foundations & Collaboration

Law et al (1996)

Foundations & Collaboration

How do we reach our goals?

• Assessment and co-operation

• Goal setting and planning

• Family and child centred intervention

• Evaluation and follow up

Foundations & Collaboration

• Only if we can measure a phenomenon in a reliable way can we make progress toward the goal of defining disorders, implementing treatments, and demonstrating that our interventions work.

Emde et al, 2005 pg 37

Foundations & Collaboration

Standardised Assessments

• Paediatric Evaluation of Disability Inventory

• School Function Assessment

• Perceived Efficacy of Goal Setting

• Functional Independence Measure for Children

Foundations & Collaboration

Upper Limb Assessments

• Dynamometry & Pinch Test

• Manual muscle testing

• Jebsen Hand Function Test

• Range Of Movement measurements

Foundations & Collaboration

How do we reach our goals?

• Assessment and co-operation

• Goal setting and planning

• Family and child centred intervention

• Evaluation and follow up

Foundations & Collaboration

How can I access OT services for my child?

Foundations & Collaboration

Finding an OT:

• Early Childhood Intervention Services

• School 

• Local Community Health Centre

• Neuromuscular clinic, RCH

Foundations & Collaboration

• Sam

• 7 years with DMD 

• Grade 2 

• School identified difficulty:– completing handwriting tasks

Case study: Primary School

Built up pencil

Angled Writing Board

Case study: Primary School

• Savant

• 16 years with DMD

• Year 11 

• Increased difficulty with writing and typing on computer

Case study: Secondary School

High low bed

Mobile hoist

Case study: Secondary School

Pressure care mattress

Threshold ramps

Case study: Secondary School

• Savant

• 16 years with DMD

• Year 11 

• Increased difficulty with writing and typing on computer

Case study: Secondary School

View Video

Funding &Equipment

Hand function and Splinting

Funding &Equipment

Funding &Equipment

Hand function and Splinting

• Joint alignment

• Contractures

• Function

• Quality of life

Victorian Aids & Equipment Program

1. Complete an application form

2. OT Assessment & letter – type of equipment needed – why it is needed

3. Get your doctor to sign a form that saysyou have a disability.(This only needs to be done for your first application)

High Low Bed

Funding &Equipment

The Department of Human Services (DHS)• Early Choices for preschoolers 

• Making a Difference for school‐aged children

• Regional Disability Support Initiative is another DHS program and is for all people up to 65 years.

• Contact your local DHS office to find out about these programs.

Threshold Ramp

Funding &Equipment

Funding &Equipment

• Early Childhood Intervention Services

• Time‐limited support

• Department of Education and Early Childhood Development

ECIS Flexible Support Packages

Links with local disability networks • Scope• www.ourcommunity.com.au• Contact your local council

Local service clubs • Rotary• Apex• Local RSL • Lions Club

Mobile Hoist

Funding &Equipment

• Local radio or newspapers 

• Major companies

• Do your own fundraising 

Environmental Control

Funding &Equipment

Vehicle Modification Subsidy

• June 2008 Vehicle Modifications are part of the Victorian A&EP.

• The person has to be eligible under A&EP Eligibility guidelines.

• Capacity exists to provide assistance to:“People with a disability requiring modifications to travel as passenger in their primary vehicle, including children and their family”

Eligibility Page 3 Vehicle Modification Subsidy Scheme Guidelines

June ‘08

Funding &Equipment

Funding &Equipment

A&EP Vehicle Modification Subsidy

What dollars are provided?• Subsidy Maximum $10,000• Partial subsidy can be applied for and further

applications can be submitted up to the maximum over a seven (7) year period.

• No funding is retrospective.

Phone: 1800 995 009Email: vmss@bhs.org.au

A&EP Vehicle Modification Subsidy

What is funded?• All modifications need to comply with:

Australian Design Rules VicRoads Standards for Registration.

• Modifications only - not car purchase• Web: www.dhs.vic.gov.au/ds/aep

Funding &Equipment

Victorian Aids & Equipment Program

• Complete an application form

• OT Assessment & Letter– type of equipment needed – why it is needed

• Doctor to confirm disability.(This only needs to be done for your first application)

Funding &Equipment

Where else can I go for help?

• Scope Equipment Resourcewww.scopevic.org.auStatewide Specialist Services 8311 4000

• Disability Onlinewww.disability.vic.gov.au

• Association for Children with a Disability03 9818 2000 or 1800 654 013 (non metro)www.acd.org.auThrough the Maze: A Guide

Funding &Equipment

Transitions

Link with services early!

• Home– Consider‐ wheelchair access ‐ Ramps– Bathroom – rails, graded shower floor, commode– Doorways – width, turning circles– Bedrooms – bed transfers, hoists

• Transportation– Car transfers– Vehicle modifications

Transitions

At school

• OT Environmental Assessment upon enrolment

• a fully accessible school environment 

• a supportive & accessible curriculum– consider technology

• appropriate educational and care support

Transitions

At school

• staff training

• collaborative working with parents and other professionals

• positive messages about disability for the child, other students & adults within the school

Transitions

How to access other helpful services:

• TADVIC– www.tadvic.asn.au

• Independent Living Centre– www.ilcaustralia.org.au

• Archicentre– www.archicentre.com.au

Transitions

Summary

TransitionsFunding & Equipment

Case Studies

Foundations & Collaboration

• Families and patients• Muscular Dystrophy Association

• Paula Bray, Westmead Children’s Hospital, Sydney

• Community OT’s

• Scope Victoria 

• RCH OT Department

THANK YOU!

Sarah Watts Megan O’Connor

sarah.watts@rch.org.au moconnor@scopevic.org.au

Occupational Therapist Occupational Therapist

Neuromuscular Clinic Eastern Specialist Services

Royal Children’s Hospital Scope (VIC) Ltd

Contact Details

• Ansved, T. (2001). "Muscle training in muscular dystrophies." Acta Physiologica Scandinavica 171(3): 359‐66.

• Bostrom, K., G. Ahlstrom, et al. (2004). "Living with a chronic deteriorating disease: the trajectory with muscular dystrophy over ten years." Disability & Rehabilitation 26(23): 1388‐98. 

• Case‐Smith. (2005). Occupational therapy for Children.

• Department of Human Services: Vehicle Modificationhttp://www.dhs.vic.gov.au/disability/supports_for_people/living_in_my_home/aids_and_equipment_program/whats_new#vehiclemodification

• Emde, R. N., Egger, H., Fenichel, E., Guedeney, A., Wise, B. K., & Wright, H. H. (2005). Introducing DC: 0‐3R. Zero to Three, 26(1), 35‐41.

• Hiller LB, Wade CK. Arch Phys Med Rehabil. 1992 Jun;73(6):527‐34. Links; Upper extremity functional assessment scales in children with Duchenne muscular dystrophy: a comparison.

• Law, M., Cooper, B., Strong, S., Stewart, D., Rigby, P & Letts, L. (1996). Thje person‐environment‐occupation model: A transactive approach to occupational performance. Canadian Journal of Occupational Therapy, 63 (1), 9‐23.

References

• Miller M.J. Williams,, L.L. Slack, S.l & Nappi J., F. (1991) The hand in Charcot Marie Tooth Disease. Jouranl of Hand Surgery 16 (B)2 191‐196.

• Nitz, J., Y. Burns, et al. (1999). "A study of repeated lateral pinch grip in myotonic dystrophy." Physiotherapy Research International 4(1): 1‐11. 

• Rahman, T., W. Sample, et al. (2007). "Design and testing of a functional arm orthosis in patients with neuromuscular diseases." IEEE Transactions on Neural Systems & Rehabilitation Engineering 15(2): 244‐51.

• Schroeder‐Smith, K., C. Tischenkel, et al. (2001). "Duchenne muscular dystrophy in females: a rare genetic disorder and occupational therapy perspectives." Occupational Therapy in Health Care 14(2): 79‐98 

• Sandin‐Aldehag, A. and H. Jonsson (2003). "Evaluation of a hand‐training programme for patients with Welander distal myopathy." Scandinavian Journal of Occupational Therapy 10(4): 188‐92. 

• Sue Manning, (2002) Parental Perspectives on Education Choices for Children with Duchenne Muscular Dystrophy, MA Dissertation, University of Leeds, Dept of Sociology and Social Policy, Disability Studies.

• Uchikwa, K., Liu, M., Hanayam,K, Tsuji T., Fujiwara, K., and Chino N. Functional Status and Muscle Strength in People with DuchenneMuscular Dystrophy Living in the Community. (2004). Journal of Rehabilitation Medicine 2004, 36: 124‐129.

• Wagner, M.B. (1993). Assessment of Hand Function in Duchenne Muscular‐Dystrophy. Archives of  Physical Rehabilitation 74 (80: 801‐804 Aug 1993

References