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Working and learning together
Associate Prof Rachael McDonald.
& Dr Jane Tracy
Centre for Developmental Disability Health
Victoria
Centre for Developmental Disability Health
www.cddh.monash.org
Rachael McDonald and Jane Tracy
2
IntroductionsAssoc Prof Rachael McDonald
Trained as an OT
Research, teaching and clinical skills with
people with complex needs to improve access
and participation
Dr Jane Tracy
Trained as GP.
Worked for 25 years in services striving to
improve the health of people with disabilities.
CDDHV
Centre within the Monash Health network
working to improve the health and healthcare of
people with disability through clinical,
educational and research activities.
Centre for Developmental Disability Health
www.cddh.monash.org
Rachael McDonald and Jane Tracy
At the CDDHV, we recognise that
those living with a disability are
the experts on their own
experience,
Their direct involvement in and
contribution to the education of
health care professionals and the
design of practical projects is
essential.
Centre for Developmental Disability Health
www.cddh.monash.org
Rachael McDonald and Jane Tracy
Format of this presentation
• Highlight areas in which the
CDDHV has longstanding
partnerships with people with
disabilities in the areas of:
– Education and training
– Research service and innovation
Centre for Developmental Disability Health
www.cddh.monash.org
Rachael McDonald and Jane Tracy
Education and Training
• People with disabilities are experts, and our
partners and colleagues in teaching medical and
allied health students.
Centre for Developmental Disability Health
www.cddh.monash.org
Rachael McDonald and Jane Tracy
For many years, CDDHV has advocated for people
with intellectual disabilities to contribute to heath
professional education through:
Co-presentations
Co-development of teaching and learning
resources
Direct teaching of allied health professionals
Direct tutoring of medical and dental students
Centre for Developmental Disability Health
www.cddh.monash.org
Rachael McDonald and Jane Tracy
Medical student teaching
• Introductory 1 hour seminar on disability to students,
including communication barriers and strategies
• Tutors work with 8-10 students for an hour during which:
–They share information about home and work, interests and
activities, and experiences of medical settings.
–Role play: students as doctors for tutor presenting with a
common condition (e.g. common cold). Students must
communicate relevant information and receive feedback from
tutor.
• Group comes together at the end to discuss how the
session went and any issues.
Centre for Developmental Disability Health
www.cddh.monash.org
Rachael McDonald and Jane Tracy
Occupational Therapy teaching
• Introduced from week 3 first unit of accelerated
learning course
• People with a range of disabilities supported to
present
• People employed as tutors/sessional staff
• Ongoing - Changes throughout the course
Positive feedback from students and tutors
Objective information in form of research evaluation
Centre for Developmental Disability Health
www.cddh.monash.org
Rachael McDonald and Jane Tracy
Evaluation with medical
students demonstrated:
•Significant positive change in attitudes:
–students more comfortable interacting with
people with disabilities after the session than
before.
•Students said they had gained a greater
understanding and insight into the
communication issues faced by this group.
(Tracy & Iacono, 2008; pending paper, 2016)
Centre for Developmental Disability Health
www.cddh.monash.org
Rachael McDonald and Jane Tracy
• We also evaluated the experience for people
with intellectual disabilities employed as
tutors for teaching sessions with medical
students
– Specifically, this study explored the
experience of the session from the
perspective of the tutors with intellectual
disabilities.
> The term Tutor was chosen to
emphasise the person’s
expertise, capacity and value.
Centre for Developmental Disability Health
www.cddh.monash.org
Rachael McDonald and Jane Tracy
Participants – Tutors with Disabilities
• Participants were invited via their day support
service to be part of the program.
• Service has an educational focus with
participants having personal goals and a
portfolio of work.
• Informed consent was gained from
participants directly. – Plain English explanatory statements + information
session at the day support base.
– Interviews with key worker – consent gained from
individual as well as worker
Centre for Developmental Disability Health
www.cddh.monash.org
Rachael McDonald and Jane Tracy
Methods
• Tutors: Pre and post session interviews (n=12), convenience sample
– 10-15 min pre and post plain English structured interviews at the
person’s day support base
– Support staff: Post session interviews with support staff
• Interviews and focus groups were transcribed verbatim and data
analysed using thematic analysis (Liamputtong, 2009)
• Coded and themes identified and confirmed 1 RA and 2 researchers
Centre for Developmental Disability Health
www.cddh.monash.org
Rachael McDonald and Jane Tracy
Themes prior to session
Motivation Feelings
Wanted to help
students to be
good doctors
Liked
meeting the
students
Wanted to
share stories
about both
interests and
health
Excited
Apprehensive/
Nervous
Centre for Developmental Disability Health
www.cddh.monash.org
Rachael McDonald and Jane Tracy
Post session themes:
Feelings
CommunicationValued
Range of feelings
“It was fun”
“I was nervous about
people
looking at me”
Confidence
All tutors
liked talking
to the
students and
being able
to direct
conversation
“I talked
about my
football team”
Tutors expressed
Pride in their
contribution
Wanted to help the
students become
good doctors
Liked being paid -
Tangible evidence of valued contribution
Centre for Developmental Disability Health
www.cddh.monash.org
Rachael McDonald and Jane Tracy
Summary
• Participating in tutorials together was
positive for both groups of people
• Positive learning was experienced by
both groups of people.
• Opportunities to work with people with
disabilities in a learning environment,
and taking students out of their comfort
zone is a great opportunity to address
attitudes
1
5
Centre for Developmental Disability Health
www.cddh.monash.org
Rachael McDonald and Jane Tracy
What are the keys to success?
• Relationship of trust
and respect
– Mutual respect
• Support
– From academic staff
– From day program/
other support staff
– Practical support
• Valued occupation
– Inherent value in the
activity
– Valued by internal and
external people
• Reward
– Payment and resources
are important
Centre for Developmental Disability Health
www.cddh.monash.org
Rachael McDonald and Jane Tracy
Development and Evaluation of Digital
learning and teaching resources
Centre for Developmental Disability Health
www.cddh.monash.org
Rachael McDonald and Jane Tracy
People with disabilities as experts, partners
and colleagues in the design and evaluation
of electronic resources, research and
innovation
Centre for Developmental Disability Health
www.cddh.monash.org
Rachael McDonald and Jane Tracy
eLearning brings together education, service
delivery, design and innovation.
• Electronic resources for health professional
training
• Electronic resources for support worker
training and information
• Accessible electronic information for people
with disabilities and their familieshttp://cddh-online.monash.org
Centre for Developmental Disability Health
www.cddh.monash.org
Rachael McDonald and Jane Tracy
Engaging people with disabilities in teaching
• This has been done in a range of ways, over the last
decade or more
• Relationships developed between people with disabilities,
educators, clinicians and researchers Trust built
• From presentations and images used in teaching, to
collaboration in development of interactive CDROM,
DVDs and multimedia packages, to online modules..
Jacqui’s story - DVD
Centre for Developmental Disability Health
www.cddh.monash.org
Rachael McDonald and Jane Tracy
How are people with disabilities engaged?
Contributing their insight and
experience to the development
of resources for clinicians and
disability support staff
e.g: Overcoming the Barriers to Cancer
Screening.
http://cddh-
online.monash.org/login/index.php
Centre for Developmental Disability Health
www.cddh.monash.org
Rachael McDonald and Jane Tracy
Research and Service Innovation and Improvement
• Sharing their understanding and experience to the design and development of
research and service innovation projects
Centre for Developmental Disability Health
www.cddh.monash.org
Rachael McDonald and Jane Tracy
Contributing to the development of
meaningful resources and evaluating their
usefulness
• Eg Development of
Healthy Active Life
Centre for Developmental Disability Health
www.cddh.monash.org
Rachael McDonald and Jane Tracy
Finding out……
• What is it that people want
to know about their own
health and well being?
• How can we support people
to contribute?
– Proxies?
– People themselves?
Centre for Developmental Disability Health
www.cddh.monash.org
Rachael McDonald and Jane Tracy
Supporting collection of data – Healthy Active Life
• Proposal developed
Focus groups with people with intellectual &
communication difficulties
Resource developed
Reviewed by people with disabilities
Changes made
Published, with plans for further resources
developed
Centre for Developmental Disability Health
www.cddh.monash.org
Rachael McDonald and Jane Tracy
What made this work?
• Focus group held at place where people felt comfortable
• Support staff not in the room, but available
• Focus group run by an experience clinician and
facilitator, with 1:1 or 1:2 facilitators
– Facilitators = new graduate health professionals
• Willingness of researchers to:
– Listen
– Change according to feedback
www.healthyactivelife.org
Centre for Developmental Disability Health
www.cddh.monash.org
Rachael McDonald and Jane Tracy
How did we collect the data? Methodologies
with people with disabilities
• Engagement and support
– Focus groups
– Interview
– Questionnaires
– Specific person based
assessments
– Families
Centre for Developmental Disability Health
www.cddh.monash.org
Rachael McDonald and Jane Tracy
Health professionals
• Not always the best
source of information
about what people with
disabilities and their family
want
• We often think we know,
but when you ask, our
ideas don’t always match
the person’s priorities!
There has
always been a
power
imbalance
“They are such
nice people, we
really don’t
want to upset
them”
They might not help
me in the future if I
don’t tell them what
they want to hear
“They are the
experts.”
Centre for Developmental Disability Health
www.cddh.monash.org
Rachael McDonald and Jane Tracy
Lessons about working together…..
Effective collaboration relies on:
• Trusting relationships built over time
• Building understanding over time and through experience
• Respect and mutual benefit
• The right amount and type of support, tailored to the individual needs
of the person.
• The resources required to support the above.
– The resources are considerable, but worth it
Nothing about us without us!(Charlton 1998 & self advocacy movements since)
29
Centre for Developmental Disability Health
www.cddh.monash.org
Rachael McDonald and Jane Tracy
Examples of colleagues with whom we have
worked for many years:
Sara Jacqui
Centre for Developmental Disability Health
www.cddh.monash.org
Rachael McDonald and Jane Tracy
We have worked with Sara for over 20 years
On
camps
with
medical
students
Helping us make our
first digital teaching
resource
Collaborating in the design and
production of Health and
Disability: Partnerships in
Action interprofessional
teaching and learning
package.
1999 2008
Centre for Developmental Disability Health
www.cddh.monash.org
Rachael McDonald and Jane Tracy
32
2006
2008
2016
Centre for Developmental Disability Health
www.cddh.monash.org
Rachael McDonald and Jane Tracy
For more information:
http://cddh-online.monash.org
33
www.cddh.monash.org
Centre for Developmental Disability Health
www.cddh.monash.org
Rachael McDonald and Jane Tracy
In conclusion….• The involvement of people with intellectual disabilities
requires thoughtful support in preparation and follow up.
• Payment is important both to demonstrate the value of
the persons time and expertise, and to recruit people to
perform this valuable teaching function.
• Participation in research and health professional
education provides valued opportunities for people with
disabilities to address personal learning objectives
including preparation, organisation, public speaking and
self advocacy.
• Advocacy is required to ensure that sufficient
resources are available to support participation.
Centre for Developmental Disability Health
www.cddh.monash.org
Rachael McDonald and Jane Tracy
Contacts:
Rachael McDonald
after May 5
Jane Tracy
