Definition of Occupational Therapy by zaaaaa4

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									         Occupational Therapy
           and children with
        Neuromuscular disorders

Sarah Watts                 Megan O’Connor
Occupational Therapist      Occupational Therapist
Neuromuscular Clinic        Eastern Specialist Services
Royal Children’s Hospital   Scope
Outline



                                 Case Studies

   Foundations & Collaboration




            Funding &
            Equipment             Transitions
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
Case study:
Primary School



•   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:
Secondary 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

                              View Video
Funding &
Equipment
Funding &
Equipment

   Hand function and Splinting
Funding &
Equipment


  Hand function and Splinting
  •   Joint alignment
  •   Contractures
  •   Function
  •   Quality of life
Funding &
Equipment

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 says
   you 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

 ECIS Flexible Support Packages
• Early Childhood 
  Intervention Services

• Time‐limited support

• Department of Education 
  and Early Childhood 
  Development
Funding &
Equipment

 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

 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 995 009
  Email:     vmss@bhs.org.au
Funding &
Equipment

     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 Resource
    www.scopevic.org.au
     Statewide Specialist Services 8311 4000
• Disability Online
     www.disability.vic.gov.au
• Association for Children with a Disability
     03 9818 2000 or 1800 654 013 (non metro)
     www.acd.org.au
     Through the Maze: A Guide
Transitions
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
Summary



                                Case Studies

  Foundations & Collaboration




           Funding &
           Equipment             Transitions
THANK YOU!


  • Families and patients
  • Muscular Dystrophy Association
  • Paula Bray, Westmead Children’s Hospital, 
    Sydney
  • Community OT’s
  • Scope Victoria 
  • RCH OT Department
Contact Details


 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
References


•   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 Modification
    http://www.dhs.vic.gov.au/disability/supports_for_people/living_in_my_home/aids_and_equipment_progra
    m/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

								
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