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ASID CONFERENCE 2014
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Rydges-EVENT
ASID2014
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ASID CONFERENCE 2014
Contents
Overview – ASID Conference 2014
- Welcome Aboard 4
- ASID 2014 Organising Committee
6
- President’s Message
- Maps
- Thank You to our Sponsors
5
7
8
- General Conference Information
14
- Keynote Presentations
16
- Social Program
Day 1 – Wednesday 5th November 2014
- Program
- Abstracts
Day 2 – Thursday 6th November 2014
- Program - Abstracts
Day 3 – Friday 7th November 2014
- Program - Abstracts
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22
23
38
40
54
56
Poster Presentations67
ASID CONFERENCE 2014
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The ASID WA conference organising committee
acknowledges the Wadjuk people as the
traditional custodians of the land and
pay respect to their elders past and present.
Welcome Aboard . . .
On behalf of the West Australian ASID conference organising committee I am
pleased to welcome you to the 49th Annual ASID conference.
This year the WA organising committee
challenges you, our keynote speakers,
delegates and speakers to consider both what
you hear over the next three days and the
presentations you will share, and ask yourself
‘how will this contribute to a better life for
someone with an intellectual disability?’
At the conclusion of the first and second
day’s proceedings we invite you to join some
of our keynote speakers who will provide
their thoughts and insights into how much
of what we have heard that day will have a
positive impact on the lives of people with
an intellectual disability. Be prepared to ask
questions and share your comments at the
discussion.
The conference program includes an
impressive range of international and local
keynotes; papers; symposiums and workshops
as well as posters and roundtables which will
allow for interaction and discussion. ASID
aims to provide a fully inclusive program and
integrated within the scientific program there
will be presentations by delegates from many
different backgrounds, including people who
receive services, people who provide services,
people from government, academics, family
members and carers.
I am sure that you will find the next three days
stimulating; challenging; informative and
perhaps a little exhausting!
We live in exciting times and the rollout of
the National Disability Insurance Scheme is
the most significant event for Australians with
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ASID CONFERENCE 2014
disability in living memory. This momentous and
ambitious scheme has been labelled the largest
piece of social policy to be implemented in
Australia for the last 30 years and so it is fitting
that the focus for the 49th Annual Australasian
Society for Intellectual Disability is about every
one of us getting on board and preparing for the
future.
As we all know, conferences are more than
just the formal program so there is a rich and
varied social program for you to enjoy, including
our opening cocktail reception; a variety of
performances to open and close the conference;
a stylish conference dinner at the iconic Red
Herring restaurant; and a wine and cheese
evening/art exhibition to finish.
Many years ago one of our ASID fellows said that
ASID conferences were quite unique because of
the eclectic nature of the conference programs
as well as the opportunities that the conference
presented to catch up with like-minded
colleagues from Australia and New Zealand as
well as the globe. The conference is a time to
meet old friends and develop new ones, to learn
and grow from the experience and to share your
knowledge and insights along the way.
It’s been a long journey for the organising
committee and we are all excited that you are
finally here with us to enjoy the results of our
endeavours.
Welcome aboard!
Sue Peden
Conference Conveyor
President’s Message . . .
I am delighted to welcome you to the 2014 ASID Board Conference in the
wonderful port city of Fremantle; and if you are visiting Western Australia,
a very warm welcome.
I am delighted to welcome you to the 2014
ASID Board Conference in the wonderful
port city of Fremantle; and if you are visiting
Western Australia, a very warm welcome.
Fremantle is a very special place and it is no
surprise that the Conference has returned
again to this historic yet modern port city. I
hope that you have the time to discover some
of the many attractions Fremantle has to offer.
conference program provides everyone with
the opportunity to explore current research
and practice with presentations from people
with intellectual disabilities and their families,
service providers and academics .I would like
to welcome our international and local keynote
speakers. We are fortunate to have speakers
who will challenge us with a diverse range of
perspectives.
ASID Conferences are wonderful and
unique experiences - hearing presentations,
networking, and renewing and making
friendships. If you have previously been to an
ASID conference you will know what I mean.
If this is your first ASID conference, take the
time to make the most of what it has to offer you will not be disappointed!
Over the next three days you will hear about
current research and practice, and discover
ideas you can take away and implement in
your own context. I also hope we all leave the
Conference challenged with as many ideas
about what we need to be doing, developing
and researching to ensure that people with
intellectual disabilities are All Aboard.
This Conference theme “All Aboard” has
been chosen to reflect the significant
changes happening in the disability sector
with the implementation of individualised
approaches for people with intellectual
disability across Australia and New Zealand.
It is an important theme because it makes us
ask the questions - what needs to change?;
what work needs to be done?; and what are
the challenges we need to address to ensure
people with disabilities are “on board”? The
I would like to thank to Conference Organising
Committee for their commitment and hard
work over the past two years to bring you this
conference. ASID is fortunate to have such an
outstanding group of members so willing to
voluntarily commit their time.
Enjoy the ASID Conference experience!
Angus Buchannan
ASID President
ASID CONFERENCE 2014
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ASID 2014 Organising Committee
The Members of the organising committee and sub-committees:
Susan Peden (Convenor)
Angus Buchanan (Chair person; Scientific program sub-committee)
Gordon Trewern (Co-chair person; Social program sub-committee)
Mauricio Sanabria (Co-chair person; Social program sub-committee)
Chris Yates (State President)
Jo Bristow (Conference Registrar)
Tom Bell (Conference Treasurer)
Ron Regan
Jenny Fairthorne
Craig Robinson
Jill Mackenzie
Rebecca Dewar
Ben Cox
Andrea Dearden
Ruth Lee
Morag Budiselik
Linda Chiu
Heath Flanagan
Michele Thomas
Lauren Falconer
Jacki Hollick
Ellen Walker
Pamela Toster
Frances Buchanan
Helen Leonard
Sincere thanks to everyone who has offered so much help, with their time,
creativity and commitment to getting us here. Special thanks to our ‘executive
group’ Chris, Ron, Angus, Gordon, Mauricio, and Mimi, our events coordinator.
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ASID CONFERENCE 2014
City of
Fremantle
Venue:
The Esplanade Hotel Fremantle - by Rydges
46-54 Marine Terrace, Fremantle WA 6160
Dinner location:
The Red Herring
26 Riverside Rd, East Fremantle WA 6158
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Thankyou to our sponsors
The organising committee would like to express our sincere thanks and appreciation to the following
organisations for their generous support of this conference.
Please support them now and in the future.
OR
CR
UI
S
E
IP
SH
S
ON
P
S
The State Government’s Disability Services
Commission is responsible for advancing
opportunities, community participation and quality
of life for people with disability. The Commission
provides direct services and support; funds
non-government agencies to provide services to
people with disability, their families and carers;
and partners and collaborates with stakeholders
to improve participation, inclusion and access for
people with disability across the community.
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ASID CONFERENCE 2014
COMMUNITY PARTNER
We are very fortunate to be the only Australian
State where the money raised from lottery
products is distributed back to the community to
support not-for-profit organisations that help build
a better Western Australia. The reason Lotterywest
is able to make grants, big and small, is through
the sale of Lotto tickets and scratchies.
The 49th Annual Australasian Society for
Intellectual Disability Conference recognises and
celebrates the participation in community life of
individuals with intellectual disabilities. Lotterywest
is proud to have given grant support to enable 50
delegates to attend the conference to be inspired
and informed by a program that includes both
current research and personal journeys.
John Atkins
Chairman, Lotterywest
ASID CONFERENCE 2014
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CRUISE SHIP SPONSOR
The School of Occupational Therapy and Social Work at Curtin
University is committed to excellence in teaching and research
with a strong research focus on disability and social inclusion.
Researchers within the School are engaged in a wide range of
research to support the inclusion and citizenship of people with
disabilities.
Areas of research include autism, employment, community living,
self-direction and management, disability inclusive development,
mental health, community mobility, end of life and family violence.
The School is committed to supporting higher degrees by
research and opportunities are available for suitable post
graduate students to participate in a vibrant and progressive
research environment. Further information on the School and
research programs is available on our website.
Here is the link to our Research webpage
http://healthsciences.curtin.edu.au/teaching/otsw_research.cfm.
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ASID CONFERENCE 2014
FERRY SPONSOR
FISHING BOAT SPONSORS
ASID CONFERENCE 2014
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FISHING BOAT SPONSORS
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ASID CONFERENCE 2014
FISHING BOAT SPONSORS
DINGHY SPONSORS
ASID CONFERENCE 2014
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General Conference Information
Registration Desk –
The Registration desk is located in the
Southern Cross Lobby. There will be
ASID conference committee members at
the registration desk to help you at any
time during the conference.
Lanyards -
Lanyards should be worn at all times for
entry into conference sessions, the trade
exhibition and social events.
Breakout Sessions -
Parallel sessions are located on the
ground and first floor. They are a first in
first served basis. Please arrive at the
room in plenty of time prior to the start
of the session; this will ensure you do
not miss out on your preferred selection.
Seats cannot be guaranteed or reserved.
Catering –
All morning teas, lunches and afternoon
teas will be held in the Sirius room on
the ground level. Please refer to the
venue floor plan for directions. If you feel
like heading out into Fremantle a quick
walk to the ‘cappuccino strip’ on South
Terrace will supply you with an array of
options to suit any taste. Please refer to
Fremantle Map for more information.
Mobile Phones –
Please be considerate to other
conference delegates and speakers by
switching your mobile phone off during
sessions
Accessibility –
The Esplanade Hotel is an accessible
venue, please enquire at the registration
desk about guidance on accessibility
within the venue. Volunteers will be
available to assists if you require.
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ASID CONFERENCE 2014
Evacuation –
In the event of an emergency please
follow the instructions of the venue
supervisors.
Taxis –
The Esplanade Hotel concierge will be
able to assist with the booking of Taxi
and Shuttle Services.
Conference Events
The following program timetable
outlines the event, session times and
locations. To find our more about each
session, please refer to the Speaker
Abstracts. The Abstract information is
listed in numerical order, matched to the
timetable.
Conference Theme
All Aboard is celebrating the
commitments of the whole of Australia to
a new way of supporting people with a
disability to have a good life.
Poster Sessions
Posters will be on display throughout the
conference in the Indian Ocean Foyer,
Poster sessions will be held in the Indian
Ocean Foyer at lunchtime on Wednesday
5th November.
ASID Awards
Wednesday 5th November
5:00pm -5:20pm
There will be a brief presentation of ASID
Awards in the Orion & Pleiades Room.
Social Program Summary
Wednesday 5th November
Opening:
Fremantle Major, Dr Brad Pettitt, will welcome attendees.
Ingrid Cumming, CEO Kart Koort Wiern Aboriginal and Torres Strait Islander Corporation, will do
Welcome to Country along with Greg Barr, Artist with a Disability, who will play the didgeridoo.
The Variety Youth Choir performance will be part of the opening ceremony.
Conference Cocktail Party:
The Conference Cocktail Party will take place at the Esplanade Hotel in the foyer of level 2. This is a
fabulous opportunity to catch up with old friends & colleagues and to meet some new ones. As part
of the welcome cocktail party we are also excited to announce the launch of a new book by Naomi
Townsen. Odette Murphy, pianist with a disability, will also entertain attendees with her amazing
talent. One ticket to the welcome cocktail party is included in your conference registration.
Thursday 6th November
Conference Dinner:
6:45pm (for a 7pm sharp start) on Thursday, 6th November.
We have a coach available to transfer people from the Esplanade Hotel to the dinner venue, if you
would like a seat on the coach please be ready outside the Esplanade Hotel main foyer by 6:30pm.
There will be a coach shuttle back at the end of the evening as well. Join us for a fantastic evening
at the spectacular location of the Red Herring – The Red Herring combines the uniqueness of
the peaceful Swan River waterside location with a menu that is an exciting reflection of Australian
contemporary cuisine. The night will be filled with fine food, music and another great opportunity to
meet new people and discuss the conference program. The Red Herring Restaurant is located on
Riverside Road, East Fremantle.
Friday 7th November
Closing Ceremony:
The conference will close with a highlight performance with a classical Indian dance from Shanti
Anita Fielding, this will be followed by a closing speech from president of ASID Angus Buchannan
and a formal handover of the “baton” to the ASID 2015 Conference Conveyor, which will be held in
Victoria.
As We Are Art Exhibition:
One of WA’s premier events that showcases the work of Western Australian artists who have an
intellectual disability. As part of the Conference program ASID has arranged for a special opening
of the exhibition on Friday 7th November, from 5 to 7 pm. This is a great way to start a Friday
evening; so come in and enjoy what Perth City has to offer at the same time enjoying some wine
and cheese whilst looking at the artworks presented in the As We Are exhibition. The As We Are
Art Award is a state-wide annual art award and exhibition open to all Western Australian artists who
have an intellectual disability (aged 18+). This year’s exhibition is being held at the prestigious
Central Park Building Foyer (152-158 St George’s Terrace, Perth).
ASID CONFERENCE 2014
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Keynote Presentations
Keynote 1
Marita Walker
Introduction to the National Disability Insurance
Scheme
Implementation of the National Disability Insurance
Scheme began in four trial sites in July 2013. The
Scheme is underpinned by the three pillars of
• An Insurance approach
• Choice and control
• Effective interface with community and mainstream
supports
It is a radical change of approach for people with
disability and the most significant social and welfare
reform since the introduction of Medicare.
Much has been learned already in the first year of
operation that has been incorporated into the three
trial sites, including the Perth Hills in WA, which
commenced on the 1st July 2014. In WA there is also
a second approach which is being delivered by the
Disability Services Commission in two further trial
sites.
In the Perth Hills people will phase in over the 8
quarters of the trial. Participants who meet the
access criteria will meet a Planning and Support
Coordinator to consider their goals and aspirations
as the foundation for their plan. The plan pays close
attention to the informal, community and mainstream
supports that are important to achieve social and
economic participation. If required funded supports
are provided within a framework of “reasonable and
necessary.”
People with intellectual disability or autism make up
60% of those currently accessing the scheme. It is
a challenge to ensure that their voices are heard in
individual planning conversations, learning what
works and doesn’t, future scheme design and agency
governance. There is still a lot to learn!
Keynote 2
Dr Ron Chalmers
Director General, Disability Services Commission
The NDIS in Western Australia – early outcomes of
the My Way trial
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ASID CONFERENCE 2014
Abstract: In August 2013 the West Australian
Government signed an agreement with the
Commonwealth to implement two separate trials of
the National Disability Insurance Scheme in Western
Australia over a two year time frame.
The National Disability Insurance Agency is
implementing a trial in the Perth Hills and the
Western Australian Disability Services Commission is
implementing an NDIS trial in the Lower South West
region and in the Cockburn-Kwinana areas.
The NDIS My Way approach builds on the positive
features of the existing disability service system
that has been developed over the past 25 years.
It is based on the internationally recognised Local
Area Coordination model and has a strong focus on
working in partnership with people with a disability;
engaging strongly with community and mainstream
resources and is supported by a mature nongovernment disability sector.
This keynote address will focus on the early outcomes
of the My Way model emerging from the Lower South
West trial site.
Keynote 3
David Corner
During my presentation, I will talk about the work of
Inclusion International and how I am involved as a
Council member for the Asia-Pacific region. A lot of
our recent work and campaigns focus on the United
Nations Convention of the Rights of Persons with
Disabilities (CRPD). Recently, we have released a
Global report on Article 12 of the CRPD which is
about the right to decide. I will talk about that as well
as some of the other work we have done in relation to
the CRPD.
Keynote 4
Prof Patricia Minnes
Moving Towards Social Inclusion and Participation of
Individuals with Intellectual Disabilities: The Journey
Continues.
What does it mean to be included? What does it
mean to participate?
Since the deinstitutionalization movement began
over 4 decades ago, there has been a great deal of
discussion about inclusion of people with intellectual
K
disabilities from different perspectives. Inclusive
education and community living have gained general
support through government policies and legislation
but it is still not clear to what extent individuals are
actually included and participating in meaningful
ways. There is general agreement that inclusion is
a complex concept that needs to be viewed from
a multidimensional perspective, however, there a
lack of consensus on the definition of inclusion and
participation and on the factors that contribute to
successful inclusion and participation.
This talk will ask participants to consider what
these concepts mean in their lives as we explore
different perspectives on concepts of inclusion and
participation.
Selected research findings will be presented
regarding what we know about the inclusion and
participation of individuals with intellectual disabilities
followed by a discussion of directions for future
research and practice.
Keynote 5
samples drawn from nationally representative
population studies). Emerging results adopting
longitudinal methods in population-representative
samples suggest that both parental psychological
health (especially high levels of stress or mental
health problems) and dimensions of parent-child
relationships may increase the risk for behavioural
and emotional problems in young children with IDD.
Implications for early intervention will be discussed.
Keynote 6
Prof Mike Kerr
The management of epilepsy in people with an
intellectual disability – it is rocket science
Epilepsy is the most common severe neurological
co-morbidity in people with an intellectual disability.
Its impact is often profound and pervasive across
the lifespan for both the individual and the family.
This impact ranges from reduced lifespan and
increased hospitalization through to an impact on
psychopathology and social integration.
Prof Richard Hastings
This presentation will argue for the reasonable
adjustments needed to meet these impacts. In
particular that an approach of simply raising care
levels to those experienced by individuals without
intellectual disability is insufficient.
Parenting training in families of children with
intellectual and developmental disabilities (IDD) has
an impressive evidence base. Several parenting
interventions such as Triple P and the Incredible
Years models have randomised controlled trials
supporting their effectiveness with parents of
children with IDD. To what extent are these parenting
interventions focused on the right variables for
change? Are parenting behaviours the only variables
we need to worry about for children with IDD? In
this presentation, I will explore these questions by
discussing evidence especially from the early life
of children with IDD. In the early years, a range of
family and social context variables may be important
in determining behavioural and emotional outcomes
for children with IDD. Socioeconomic position is
clearly associated with behavioural and emotional
inequalities in young children with IDD. However,
rarely have longitudinal models been used to
explore other early pathways for the development of
behavioural and emotional problems in IDD. Even
rarer is the use of research samples and designs
that may be less affected by sample biases (i.e.,
Assessing an individual and their epilepsy needs
the application of multiple competencies. These
include a detailed knowledge of: epilepsy risk
including death, individual variation including genetic
causation, treatment effects especially impact on
behavior, and understanding treatment availability
and choice.
The family as a context for the behavioural and
emotional health of young children with intellectual
and developmental disabilities
The reasonable adjustments mean that all services
and individuals who work with people with intellectual
disability must apply the highest scientific evidence. I
will describe how this may be done and how it can be
prioritized for the most significant needs.
The conclusion is that a range of professionals will
need to keep up with the rocket science to ensure the
inequality in health experienced by this population is
not extended.
ASID CONFERENCE 2014
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K
Keynote Presentations
Keynote 7
Keynote 8
Prof Glynis Murphy
Dr Torbjorn Falkmer
Community–based Treatment Options for People with
ID who Break the Law
Innovations in Autism research – Launching into the
adult space
At times, people with intellectual disabilities break the
law, like anyone else. In most developed countries,
deinstitutionalisation, with all its many benefits, has
also brought the debatable benefit that people with
ID are subject to the criminal law, just like anyone in
the general population. Yet it is known that people
with ID are very vulnerable to false confessions,
since they often do not understand their rights
at the police station or in court and are subject
to acquiescence and suggestibility when under
pressure in both settings. Many countries therefore
have built in protections for people with ID in the
Criminal Justice System and these include the issue
of mens rea, the need to be fit to plead (or have
capacity to stand trial), and the possibility of other
means of diversion out of the CJS and/or mandated
treatment in the community. Historically, fitness to
plead legislation has been unsatisfactory in the UK
as well as in the USA and the reasons for this will
be reviewed. Nowadays very few fitness to plead
findings are made for people with ID in the UK and
this will be discussed. Many professionals, families
and service users consider it preferable to be treated
in the community and there are now a range of such
treatment options available in the UK, including
anger management training, treatment for those who
set fires, and treatment for sexual offenders. These
treatments and their outcomes will be reviewed and
the linked risk assessments will be considered. Given
these developments in treatment, the question will be
posed: Is prison or long term detention in anyone’s
best interest? It will be argued that it is costly for
Governments as well prolonging discriminatory
treatment for people with ID.
Research in Autism Spectrum Disorders (ASD) is
not dissimilar to rocket science. Almost all of ASD
research is done on the ground at the base, i.e.,
in early childhood or even before, and at the very
core of the body structure. Advances in technology
allows genes, blood, saliva, brain cells, brain tissues,
and brain interconnectivity to be the foci, all in order
to understand the enigma of ASD, or as some TVviewers would name it; the Big Bang Theory. The
problem is that while research is focusing on solving
this conundrum, 1% of school leavers transition to
adulthood and face all its challenges on top of their
diagnosis of ASD. In launching from their families,
support is lost and the vast unknown lies ahead.
Sadly, the 1% figure also applies to the share of ASD
related research that targets adults on the spectrum.
So while progress is made on the ground, little is
known in the adult space. But there’s hope; this
keynote address will take you on a journey with adults
with ASD, trying to find their place in society. It will
guide you through research ranging all the way from
brainwaves, eye movements, and emotion recognition
to employers’ workplace adjustments, driving, family
functioning, and the costs of ASD. This journey will
even take you to a virtual space where a diagnosis
of ASD is the only valid entry passport: the Autism
Software Inspection Academy.
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ASID CONFERENCE 2014
The School of Occupational
Therapy and Social Work is
a proud sponsor of the 49th
Annual ASID Conference 2014.
Make tomorrow better.
CRICOS Provider code 00301J (WA) 02637B (NSW). Curtin University is a trademark of Curtin University of Technology.
1458HS
Annual Australasian
Society for Intellectual
Disability Conference
Making it real ... together
Save the Date!!
11-13 November 2015
Crown Promenade Southbank, Melbourne
A platform for delegates to come together and explore what is means to
convert recent advances in disability legislation and policy into real and
meaningful changes for people with intellectual disability.
The conference will bring together a range of stakeholders: people with
intellectual disability and their families and support persons, coordinators,
disability support workers, researchers from universities, health
professionals and policy makers, to share and prompt new ideas around
the idea of collaboration and inclusion.
Making it real ... together.
www.asid.asn.au
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ASID CONFERENCE 2014
DAY
Wednesday 5th
November 2014
ASID CONFERENCE 2014
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1.15 pm
12.15 pm
11.45 am
11.15 am
10.45 am
Rooms
10.15 am
9.30 am
8.45 am
7.00 am
ASID CONFERENCE 2014
`
LUNCH - Room – Sirius
N Hagiliassis, E Wilson, R Campain,
J McGillivray, M Caldwell & J Graffam
Measuring social inclusion of people with intellectual
disability In Australia: initial evidence about a new tool
7.
The NDIS: Doing it My Way in WA
Room – Orion & Pleiades
Dr Ron Chalmers Director General, Disability Services Commission
Keynote 2:
Poster Session - Southern Cross Lobby / Prince Regent
L Mitchell, R Baker, N Ollington, A O’Brien, M
Jessop & J Briers
Positive Behaviour Support and Quality of Life in a
residential support setting
4.
J Cleghorn
The ethnographic method: a case study for research
among people with severe intellectual disabilities.
6.
3.
M Cubbage & M Edwards
The Positive Behaviour Framework: a descriptive
journey of implementation.
G Ottmann, K McVilly & J Anderson
Safeguarding Children and Adults with Disabilities: A
Framework for Disability Service Providers
5.
P Fitzpatrick
Building the capacity to deliver best practice in
positive behaviour support to people with a disability
. 2.
Chair: Jacki Hollick
1
Chair: Claire Quilliam
Positive behaviour
Symposium
C. Bigby
The National Disability Insurance
Scheme
Inclusion
King Sound /Admiralty Gulf
Rottnest
MORNING TEA - Room – Sirius
Room – Orion & Pleiades
(Sponsored Exclusively by Curtin School of Occupational Therapy and Social Work)
Marita Walker National Disability Insurance Agency
Keynote 1:
OPENING CEREMONY
REGISTRATION
Orion & Pleiades
Wednesday 5 November 2014
22
T Pikora, J Bourke, K Bathgate, K-R Foley,
N Lennox & H Leonard
Health conditions and their impact among adolescents
and young adults with Down syndrome
10.
J Garriock, G Lim & J Ng
An independent review of polypharmacy risks for people
with intellectual disabilities
9.
A Thomson, S Thoresen & E Cocks
The WA Study of Health and Intellectual Disability: an
overview
8.
Chair: Laura Hogan
Health
Carnac
1
4.00 pm
3.30pm
3.00 pm
2.30 pm
2.00 pm
Rooms
A roundtable discussion of successful
strategies that promote inclusion of
people with intellectual disability
P Minnes
Social Participation: the way forward
26.
23
5.30 pm
Cocktail Function - Room – Orion & Pleiades
CLOSE
Roundtable - Room – Orion & Pleiades
E Walker
All Aboard MS Microboard: how
microboards are used to address the
challenges faced by young adults with
complex disabilities, and their families
25.
5.20 pm
N Crates & M Spicer
Trauma Informed Support for people
with disability, compatibility with Positive
Behaviour Support and opportunities to
enhance existing practice.
24.
R Munn
Children’s Therapeutic Accommodation
in action: a case study from South
Australia.
23.
Presentation of ASID Awards - Room – Orion & Pleiades
L Hamilton
Beyond the file note: making group
homes genuine homes
22.
C Quilliam, C Bigby & J Douglas
Preliminary findings from the frontline
perspective of paperwork in group
homes for people with intellectual
disability
21.
Chair: Michael Keates
Roundtable
Chair: Ian Pearce
Symposium
Therapeutic approaches
AFTERNOON TEA - Room – Sirius
J Burton, H Redfern, H Seiffert & B
Lonne
Long stays in hospital for people with
disabilities: Is this the right care at the
right place?
28.
N James
Family carers’ experience of their
relative’s need for admission to an
Assessment and Treatment Unit
27.
Chair: Errol Cocks
Health
S Gellar
Autism Spectrum Disorders in middle
to late adulthood
20.
18.
J Merrells, A Buchanan & R Waters
How young adults with an intellectual
disability spend their time, make friends
and feel included: experiences of
social inclusion
J Bourke, H Leonard & J Marsh
How common is intellectual disability?
19.
Chair: Ben Crothers
Health
Carnac
C Furner, C Oswald & A Ackland
Being active and not just visible - Young
adults with severe, multiple disability
embrace true inclusion through their
community-based day program
17.
Chair: Hilary Johnson
Inclusion
Garden
Accommodation
K Boxall, S Dowson & P Beresford
Selling Choice and Control:
Some critical reflections on the
UK Personalisation Agenda and
the Australian National Disability
Insurance Scheme (NDIS)
E Cocks & S Thoresen
Measuring quality of individual
supported living (ISL) for adults with
developmental disability
16.
14.
12.
M Arco, T Robinson & A Perlinski
Shared Management ­
My Moorditj Mob¹s Experience
F Redgrove
Concepts of Adulthood for Young
People with Intellectual Disability
– A source of conflict amongst
stakeholders
15.
E Ervine
Services Our Way – The Aboriginal way
13.
L Jay
In a landscape of ‘choice and control’
whose voice makes the choice?
11.
Chair: Justin O’Meara Smith
Chair: Chris Yates
Chair: Angus Buchanan
Rottnest
Adulthood
King Sound /Admiralty Gulf
AccommodationIndigenous
Orion & Pleiades
5.00 pm
4.30 pm
ASID CONFERENCE 2014
Abstracts
1.
2.
The NDIS and People with Intellectual Disability:
Challenges and Opportunities.
Building the capacity of human services to deliver
best practice in positive behaviour support to people
with a disability
C Bigby
People with intellectual disability will comprise 6070% of those eligible for individualised packages of
support in Tier 3 of the National Disability Insurance
Scheme (NDIS). The scheme is a ‘work in progress’
with trial sites in each State and Territory with the
exception of Queensland. Experiences in the trail
sites are providing opportunities for conversations
between the NDIA, the agency responsible for its
administration, people who use the scheme and
other stakeholders, that will help shape the scheme’s
design. As board member John Walsh said at the
NSW NCID conference ‘we want to hear from you
guys’. This symposium is an opportunity to hear
from a panel of speakers with varying types of
engagement in the NDIS and its trail sites, to both
gain a snap shot of what’s happening and debate
some of the key issues for people with intellectual
disability that are emerging.
Key points for discussion will be
• To what extent are the voices and perspectives of
people with intellectual disability embedded in the
fabric of the new scheme?
• What impact is the additional funding on the quality
of support services and improved outcomes for
people already receipt of services?
• How are people with intellectual disability being
supported to make decisions both about their
plans and the services they purchase- are effective
mechanism in place to mediate any differing views
about their wants and who should support them to
make decisions?
• Is the market providing what people with
intellectual disability in the pilot sites need or wantwhat are the gaps?
• Are some people in the pilot sites benefiting more
than others – how can equity for be ensured?
• What is the place of advocacy as the new scheme
rolls out?
• What energy is being directed to building
mainstream capacity of housing, health, education
and criminal justice services? Why is this critical to
success of the scheme?
24
ASID CONFERENCE 2014
P Fitzpatrick
Background: Research evidence suggests that
positive behaviour support is best practice for people
with a disability who present with behaviours of
concern. This research paper asks what the best
approach is to building the capacity of disability
support workers from different organisations with
diverse educational backgrounds to deliver this
best practice. This study compares different forms
of training, one of which used an organisational
change strategy that focused on providing the
positive behaviour skills to people using course
material that focused on: the development of a good
quality behaviour support plan; how to assess the
quality of a behaviour support plan and as well as
how to implement similar training within their own
organisation.
Method: The study compares the quality of groups
of 30 Behaviour Support Plans (BSPs) using the
Behaviour Support Plan Quality Evaluation II tool
(included reference). Group 1: BSPs written by
people who did not attend any training; Group 2:
BSPs written by people who attended a half day BSP
Toolkit Training; Group 3: BSPS by attendees of a
four day PBS training: Group 4: BSPs by those who
attended both. A between groups, pre and post-test
design will be used to examine group differences in
the quality of behaviour support plans as assessed
by the BSP-QE II.
Results: Data analysis is currently being undertaken.
Final results will be available at the time of
presentation.
Implications: The results of this research will help
inform service providers of the optimum means
to both train staff in PBS and BSP writing as well
as promote successful implementation of these
approaches within their organisations.
3.
M Cubbage & M Edwards
The Positive Behaviour Framework: A Descriptive
Journey of Implementation.
Wednesday 5 November 2014
Background: In 2007 the Sector Health Check on
Disability Services concluded that “challenging
behaviour is a human rights and quality of life
issue for individuals, primary carers and families”
and identified that there is “limited capacity of the
sector as a whole, with only a few providers having
the knowledge and skills to manage challenging
behaviours. This paper tells the story of how the
Disability Services Commission (the Commission)
addressed this issue.
Method: The Commission subsequently established
the Positive Behaviour Framework (the Framework)
and has worked with people with families and
the disability sector to commission a series of
pilot studies. These studies have built evidence
of effective implementation strategies of Positive
Behaviour Support as an evidence-based and
contemporary approach to supporting the needs of
people with disability who sometimes experience
challenging behaviour. The University of Western
Australian is partnering with the Commission to
analyse how the implementation of the Framework
can best proceed across the state.
Results: Results will integrate management and
organisational change theory into the existing
knowledge of Positive Behaviour Support and review
the preliminary outcomes of a new approach to
organisational research (Qualitative Comparative
Analysis).
Implications: This research has the potential to inform
the design and delivery of services to a population of
people who face systemic disadvantage.
1
marked by anxiety, conflict, and aggression, a
partnership was developed between STAR Tasmania
Inc. and the Disability Assessment and Advisory
Team (South West) to address readiness and training.
Method: Staff training and support encompassed a
set of values including leadership, staff readiness,
and ownership. STAR values were implemented
alongside five common approaches for Active
Support and PBS: (a) Communication with Style, (b)
Support Communication – Initiating and Engaging,
(c) Social Role Modelling, (d) Activity Planning,
and (e) Supporting Skill Development. Manageable
protocols were developed with staff input that
described observable staff action.
Results : Feedback from stakeholders indicated that
residents were happier, had improved relationships
with staff, family and friends, and were able to use
a wider range of skills to participate more fully in
residential responsibilities and leisure activities. Staff
reported an increased understanding of requirements
as well as confidence surrounding their ability to
provide consistent quality service.
Implications: Coordinated and innovative use
of established best practice, including change
management and training can change staff attitude
and behaviour and lead to improved outcomes for
residents and positive work-related outcomes for staff
in residential care settings.
5.
G Ottmann, K McVilly & J Anderson
4.
Presenting the findings of a national Delphi study
focusing on the safeguarding of children and adults
with disabilities within a service provider setting:
Towards a holistic safeguarding framework
Positive Behaviour Support and Quality of Life in a
Residential Support Setting
Background: Research conducted in the 1990s
revealed the tragic irony that exposure to the
disability support system, and particularly to its
institutional forms, is a major risk factor related to the
abuse of children and adults with a disability. While
a range of measures have been introduced since
to reduce this risk, re-occurring events of abuse
and neglect in the patchwork of small residential
group homes, day centres, education and training
centres, and domiciliary services that constitute the
Australian disability support sector demonstrate
that processes geared to safeguard children and
adults with a disability are far from effective. This
L Mitchell, R Baker, N Ollington, A O’Brien,
M Jessop & J Briers
Background: Research has shown that in residential
support settings Positive Behaviour Support
(PBS) training increases the likelihood of positive
relationships between staff and residents and
decreases the likelihood of challenging behaviours;
and Active Support (AS) increases engagement.
However practice knowledge indicates that efforts
in implementing either approach may falter due to
organisational and staff readiness. To improve the
support culture in a residential setting in Tasmania
ASID CONFERENCE 2014
25
Abstracts
paper reports on a project that sought to explore
the most important barriers and facilitators to the
safeguarding of children and adults with disabilities
from abuse and neglect within a service provider
context. The project forms the basis of a national,
multi-disciplinary, cross-sector collaboration involving
researchers, government, peak bodies, and service
provider representatives aimed at the development
of a holistic safeguarding framework for disability
services providers.
Method: A modified on-line Delphi study was
conducted generating 257 responses from Australian
disability services providers. Round 1 comprised
demographic, knowledge and attitudes, and
questions highlighting barriers and facilitators to
safeguarding measures. Concept mapping and
thematic analysis was employed to analyse the data.
Round 2 asked participants to rate responses to
two of the open ended questions (what are the most
important facilitators/barriers to safeguarding children
and adults with disabilities).
Results: The study generated over 200 consensus
statements outlining the key components of a
comprehensive safeguarding framework associated
with six different domains.
Implications: The study generates a much needed
evidence base on which a safeguarding framework
for disability service providers can be constructed.
The study reveals important limitations of the corner
stones of current safeguarding approaches (police
checks and reporting) and clearly outlines the need
for a more holistic approach.
6.
J Cleghorn
The ethnographic method: a case study for research
among people with severe intellectual disabilities
Background: There is a plethora of social research
among people with intellectual disabilities, but
somewhat of a dearth of qualitative social research
conducted with people with more severe disabilities.
This is hardly surprising given the difficulties of time,
budget, access, and communication.
Method: I spent the 2013 school year at a Perth
special education needs school working with
eighteen senior students, and the staff, with the hope
of gaining an understanding of the students’ sense of
‘self.’ using the ethnographic methods of participant-
26
ASID CONFERENCE 2014
observation (students), guided conversations (staff),
and interviews (parents), I got to know the students
and their socio-cultural environment. There is
nothing new about these methods, but participantobservation, in the true ethnographic sense, is not
commonly used to conduct research among people
with severe intellectual disabilities.
Results: Using a case study of a young woman,
Diana, I illustrate the utility of this method for gaining
an understanding of her sense of self, and her social
world. From the first time Diana and I met I was made
aware that she could be a danger to me, and indeed I
spent many months being afraid of her, and what she
might do to me. But, over time we each accepted the
presence of one another in the school, and became
firm friends.
Implications: There are constraints on participantobservation, but if these can be overcome
there are great benefits to getting to know your
research participants yourself, as well as through
the knowledge and experience of their parents,
guardians, teachers, and carers.
7.
N Hagiliassis, E Wilson, R Campain, J McGillivray,
M Caldwell & J Graffam
Measuring Social Inclusion of People with Intellectual
Disability In Australia: Initial Evidence About a New
Tool
Background: Social inclusion as a concept has
figured prominently in policy and planning for
disability services and is an expected outcome of
the National Disability Insurance Scheme. There is
however a need for valid instruments that accurately
capture the judgement of people with intellectual
disability on the outcomes resulting from services,
supports and government policies. The paper
provides initial evidence for the validity and reliability
characteristics of the Social Inclusion Measure (SIM),
a new tool for measuring social inclusion, designed to
be accessible to people with a range of abilities.
Method: The SIM is an on-line administration tool
designed to be accessed (with or without support)
by people with a range of abilities including people
with intellectual disability and communication
impairment. This group is typically excluded from
direct surveying, with default reliance on proxy
Wednesday 5 November 2014
reporting. To the extent possible, the SIM enables the
subjective experience of the person to be captured
and prioritized.
Results: The SIM was completed by 671 people with
disabilities. Participants were recruited through the
‘1 in 4 Poll’, an Australia-wide poll which gathers
first hand experiences of people with a disability on
issues of importance to them. When the 22 items
of the SIM were analysed, they emerged along four
recognisable dimensions: Social Participation, Social
Relationships, Services Access and Economic/
Material Access. Internal consistency of items was
high while the SIM correlated highly with the Personal
Wellbeing Index (Cummins 1997).
Implications: Initial evidence suggests the SIM is a
valid and reliable tool for monitoring social inclusion
status, a critical area of social and population level
change targeted for people with disability in Australia.
8.
A Thomson, S Thoresen & E Cocks
The WA Study of Health and Intellectual Disability: an
overview
Background: International and national research
and reports indicate poorer health for adults with
intellectual disability (ID) than the general population.
The WA Study of Health and Intellectual Disability
(WASHID) identified factors affecting the health of
adults with ID and is a baseline of this cohort’s health
status.
Method: Structured interviews were carried out in
the first half of 2013. The majority were face-toface interviews. A total of 328 participants of 413
volunteers (79%) were surveyed. The structured
interview included socio-demographics, health status,
health behaviours, and health systems.
Results: Nearly 90% reported one or more long-term
health conditions, despite most participants’ health
(77%) being described as good/very good. Epilepsy
and some mental illnesses were more common than
in the general population. Cancers, high blood
pressure and high cholesterol were reported less
frequently. 70% were on medication/s.
About half of the participants were overweight/obese
(58%) and 47% spent seven or more hours/day sitting
down. 15% had seven serves of fruit and vegetables/
day. Few adults smoked (5.8%), or drank alcohol
more than twice/week (3.3%).
1
In the previous year, use of hospital services was
high (30%), and 22% had seen a mental health
professional. Most people said their GP and staff
were respectful and explained things clearly.
Cervical and bowel cancer tests were rare.
Implications: Adults with ID in WA have poor health.
The study did not identify any ID-specific preventive
measures or interventions used to help people with ID
to live a good life.
9.
J Garriock, G Lim & J Ng
‘Multiplicity risk’ - An independent review of
polypharmacy risks for people with intellectual
disabilities
Background: The risks of polypharmacy (the use
of multiple medications) in the treatment of people
with intellectual disabilities are well documented,
both nationally and internationally. These risks are
compounded by this group now living longer and
developing age-related conditions, such as Type 2
diabetes.
This paper presents the work Spectrum Care is
undertaking to address the issue of polypharmacy for
people accessing its residential services.
Method: Medication charts for all people accessing
these services have been assessed to determine the
extent of polypharmacy and to identify people most at
risk (ie highest number of medications per day, plus
age and the extent/nature of disability).
A medication review by an independent panel
(pharmacist, pharmacologist, clinical nurse specialist
and clinical advisor) will commence with the 10
people identified as most at risk.
Results: The recommended medication changes will
be effected by the review group, in consultation with
the appropriate prescribers (general practitioners,
clinical psychologists, psychiatrists etc). Reviews will
continue with the next group of 10 high-risk people
until all people accessing this service have had their
medications reviewed.
Implications: Post-medication reviews will be
completed with the initial group of 10 people (and
their support staff) six months later to assess
reductions in falls and adverse drug reactions, along
with improvements in cognition, mobility and quality
of life.
ASID CONFERENCE 2014
27
Abstracts
10.
T Pikora, J Bourke, K Bathgate, K-R Foley,
N Lennox & H Leonard
Health conditions and their impact among
adolescents and young adults with Down syndrome
Background: Young adults with Down syndrome are
at increased risk for a variety of medical conditions
which may impact upon their lives.
Methods: Using questionnaire data collected in 2011
from parents of young adults with Down syndrome we
investigated the medical conditions experienced by
their children in the previous 12 months. Univariate,
linear and logistic regression analyses were
performed.
Results: We found that in addition to the conditions
commonly experienced by children with Down
syndrome, including eye and vision problems
(affecting 73%), ear and hearing problems (affecting
45%), cardiac (affecting 25%) and respiratory
problems (affecting 36%), conditions also found to
be prevalent within our young adult cohort included
musculoskeletal conditions (affecting 61%), body
weight (affecting 57%), skin (affecting 56%) and
mental health (affecting 32%) conditions and among
young women menstrual conditions (affecting 58%).
Few parents reported that these conditions had no
impact, with common impacts related to restrictions
in opportunities to participate in employment and
community leisure activities for the young people, as
well as safety concerns.
Implications: There is the need to monitor, screen
and provide appropriate strategies such as through
the promotion of healthy lifestyles to prevent the
development of comorbidities in young people with
Down syndrome and, where present, to reduce their
impact.
11.
L Jay
In a landscape of ‘choice and control’ whose voice
makes the choice?
People whose lives are characterised by challenges
associated with intellectual, developmental and/
or communication disabilities are among the most
marginalised citizens in many developed countries.
28
ASID CONFERENCE 2014
The rights and opportunities for many such
individuals to make or participate in decisions that
directly affect their own welfare and life experiences
are frequently undermined or extinguished - even
by well-intentioned people. The arrival of the NDIS
in Australia has been accompanied by the broad
adoption of the phrase ‘choice and control’ as a key
descriptor. It reflects the growing expectations of
many service recipients and their family members
within this cohort. As the established support systems
that service this group adapt, it is imperative that
we ask the question: “whose voice is being heard
in the exercise of choice?” In considering this
question the concept of governance can usefully be
applied at the level of individuals’ lives. This paper
demonstrates that this concept can reposition such
individuals as more engaged co-designers of the
services and supports they need. However, the
application of governance at the level of individual
lives requires service agencies, family members and
friends to re-evaluate the nature of their relationships
and engagement with people living with intellectual
disability. The paper also identifies some potential
public policy implications.
12.
K Boxall, S Dowson & P Beresford
Selling Choice and Control: Some critical reflections
on the UK Personalisation Agenda and the Australian
National Disability Insurance Scheme
Background: In order to compete in increasingly
globalised markets, governments may have little
choice but to reduce state spending and adopt
marketised policies; those ‘selling’ individual choice
and control offer convenient and timely support for
the development of such policies in disability care.
Method: UK policy analysis, with some comparisons
to Australia.
Results: In the UK, from 2003, personalisation
was promoted using marketing techniques which
broadcast ‘feel good’ stories of individual choice
and control, whilst at the same time diverting
attention from potential problems associated with
the wholesale implementation of personalisation
ideals. Individual personal budgets similarly traded
on notions of social inclusion by focussing attention
on barrier removal in individual people’s lives, thus
diverting attention from structural barriers faced
Wednesday 5 November 2014
by people with intellectual disabilities in British
society. As a marketing exercise, the personalisation
approach has been outstandingly effective; however
many people with intellectual disabilities have seen
little positive change.
Implications: The UK experience may provide some
important pointers when implementing the Australian
National Disability Insurance Scheme.
13.
E Ervine
Services Our Way - The Aboriginal Way
Despite a high prevalence of disability, Aboriginal
Australians access disability services in Australia
less than non-Aboriginal Australians with a disability,
this group regularly encounter barriers to accessing
appropriate services. Services Our Way commenced
in New England in 2011. Services Our Way is an
Aboriginal program designed to give Indigenous
people with a disability and their carers/ families
individualised funding options to help support them
with their disability, re-engage them with their local
community networks and resources, increase their
capacity to engage with external support networks
and utilise existing family networks, promote
independence and self-sufficiency in their decision
making and future planning.
In this presentation Elizabeth Ervine Manager
Services Our Way and Deborah Missingham Senior
Manager Access ADHC will discuss progress
being made in the delivery of disability services for
Indigenous people with an intellectual disability.
Services Our Way has worked in conjunction with
service providers and ADHC to supplement cultural
support for Aboriginal clients to ensure that they are
linked in with local service providers, whether they be
Indigenous or non-Indigenous. Services Our Way has
a focus on capacity building and acknowledges that
the program is at a point where facilitating access to
the disability system is a baseline step, but effectively
preparing people for the National Disability Insurance
Scheme is the critical goal. As a result of Services our
Way in New England there has been a major increase
in numbers of Aboriginal people with a disability
accessing services. Since the start of Services Our
Way there has been an in increasing awareness and
uptake of services.
1
14.
M Arco, T Robinson, & A Perlinski
Shared Management ­
My Moorditj Mob¹s Experience
Background: Shared Management is a “Do It
Yourself” (DIY) approach that combines self-direction
with an agency administrative service to enable
individuals and families to employ, set up, and tailor
support around their particular lifestyle.
Method: A 33-year-old Noongar man with complex
needs, and his family, living in the Lower South West
of Western Australia, chose a My Place Shared
Management service after no other agency in the
local area was prepared to offer a service. Using the
shared management approach they successfully
arranged meaningful and culturally appropriate
support to achieve a person centred, healthy and
engaged lifestyle.
Results: Although liberating, DIY has not been
easy. Being responsible for selecting, preparing
and skilling assistants to be work ready, along with
scheduling activities and overseeing everyday living
plans, presented a myriad of challenges. Maintaining
ties with supporters from various government and
non-government agencies proved an important
strategy to assist with problem solving and resolving
issues. Overall results show improved wellbeing and
reduced involvement with the justice system.
Implications: On the one hand the “DIY” approach
allows greater control and flexibility of support along
with the ability to maximise available funds all with
minimal agency involvement. On the other hand,
“DIY” can require a significant amount of time and
energy by individuals and their families to set things
up and to keep them running, especially for those
with more complex needs. The up side though is
generally positive with people generally enjoying a
more improved lifestyle away from institutional living.
15.
F Redgrove
Concepts of Adulthood for Young People with
Intellectual Disability – A source of conflict amongst
stakeholders
Background: Transition from schooling to adult
ASID CONFERENCE 2014
29
Abstracts
services is well recognised as stressful for families of
young people with intellectual disability (ID), and that
this stress may be attributable to tension between
stakeholders
This PhD study considers the possibility that families
of young people with ID and professionals and policy
makers employ conflicting processes of decision
making to guide their actions during this transitional
phase.
Method: Focus groups and semi-structured interviews
were used to collect data for concept analysis to
determine the defining attributes of adulthood as
considered by families and support staff. Concepts
and attributes identified were mapped to represent
the relationship, and determine similarities and
dissimilarities between conceptualisations of
adulthood by stakeholders.
Results: The study found common factors to
conceptualisations of adulthood between family
members and staff, such as physical maturity, no
longer being a child, being over 18, and being able
to contribute to, rather than being a burden on the
community. However, significant differences were
found that can be aligned to five main themes:
• Adults are independent being
• Adults are rational beings
• Adult life offers meaning
• Adults are accepted members of society
• Adulthood may be considered as actual or “virtual”
(created by those in a position to control)
Implications: The paper recognises the need to
consider an adequate definition of adulthood to allow
families and support staff to communicate and make
decisions using the same conceptualisation of the
term.
16.
E Cocks & S Thoresen
Measuring quality of individual supported living (ISL)
for adults with developmental disability
Background: Supporting adults with disabilities to
live good lives in their own homes has emerged
relatively recently and is strongly encouraged by
contemporary policy in the disability sector, although
individual supported living (ISL) has received very
30
ASID CONFERENCE 2014
little consideration in the formal research literature.
This approach will receive a substantial boost with
the advent of the National Disability Insurance
Scheme and the enhanced demand for ISL that will
occur. However congregating people with disabilities
with few life choices into group homes, for example,
remains the common option. We need a more
rigorous, critical understanding of the meaning and
quality of supporting one person at a time in homes of
their own choice.
Method: Over five years, using qualitative research
methods, we worked with people with disabilities,
families, advocates, and service providers
experienced with ISL. We developed a framework
describing what ISL means. Then we operationalised
that framework into a method for evaluating and
reviewing the quality of arrangements.
Results: Preconceptions about who can or cannot
live in an ISL arrangement were challenged. People
with very high support needs thrived in ISL. There
were many different manifestations of ISL. There were
many long-term arrangements and relationships that
surpassed the uncertainties of formal congregate
options. The key aspects of the framework
and instrument coincided with the universally
acknowledged concept of “one’s own home”, which
takes many forms but consistently emphasises
specific qualities.
Implications: We plan to use the instrument to provide
training and to examine the relationship between
ISL quality and outcomes including inclusion,
participation, friendships, and costs.
17.
C Furner, C Oswald & A Ackland
Being active and not just visible - Young adults with
severe, multiple disability embrace true inclusion
through their community-based day program
Breakaway’s Post School Lifestyle Program was
borne out of an idea from one of our families, who
had a vision for a quality and real day program for
their daughter. They had been disillusioned with past
experiences and wanted a program that embraced
true inclusion, active attendance and participation
whilst also having safeguards in place so full
participation happened – no matter what!
From this vision, and in consultation with families and
Wednesday 5 November 2014
individuals, we developed what we consider to be
a truly inclusive day program for eight young adults
with multiple disabilities. Our program focuses on the
person first: ensuring they are involved in planning for
their lifestyle and allows for support to be provided
should health needs of the person change and they
cannot access their chosen activities. Each of the
guests have goals: ones they have identified as being
important to them and ones that they have the power
to change.
Over the years, the guests have grown in confidence
and are personally known by many, embracing a
true sense of belonging. The choices, flexibility and
endless possibilities for the people we support are
present daily and the program is fluid to allow for
changes to occur without disruption.
The implications for our program is that through
mutual respect and ability driven expectations
we’re learning and growing from our combined
experiences. Planning for the future is imperative due
to the changes within our sector, however our vision
and reason for being will always be central to our
planning and delivery.
18.
J Merrells, A Buchanan & R Waters
How young adults with an intellectual disability
spend their time, make friends and feel included:
experiences of social inclusion
Background: There is limited research regarding
social inclusion from the perspective of young
adults with intellectual disability. Social inclusion is a
core domain of quality of life and crucial to positive
outcomes in life.
Method: Ten participants aged 18 to 24 years with
a diagnosis of intellectual disability were selected
through purposive sampling and interviewed about
how they spend their time, make friends and feel
included. A phenomenological approach was used to
explore this. NVivo 10 software was used to assist in
organising the data for the thematic analysis for this
research project.
Results: The majority of young adults with intellectual
disability do not have contact with many people of
similar age without disability who are not paid staff or
family. They spend the majority of their time involved
in work, formal programs and at home or with
1
family. Few have regular contact with friends. Work,
neighbours, programs and educational venues help
young adults with intellectual disability meet other
people and feel ‘part of something’; however entry
into these can be difficult.
Implications: Service providers of social inclusion
initiatives as well as health professionals, teachers
and carers will benefit from insight into the lives
of West Australian young adults with intellectual
disabilities and their experiences of social inclusion
from their perspective.
19.
J Bourke, H Leonard & J Marsh
How common is intellectual disability?
Background: The ability to provide accurate and valid
estimates of the prevalence of intellectual disability
has been challenging because of inconsistencies
in definition and case ascertainment. In Western
Australia, the IDEA (Intellectual Disability Exploring
Answers) database has been established since 2003
as a population-based register on individuals with an
intellectual disability, sourced from notifications from
both the Disability Services Commission (DSC) and
the Department of Education. The database provides
a resource for studies linking to other population
datasets.
Method: Individuals born from 1983-2010 with an
intellectual disability (ID) and identified by either DSC
or Education have been linked to birth data held
at the Data Linkage Branch of the Department of
Health, WA. Prevalence of intellectual disability was
calculated using total population live-births as the
denominator. Where available, cause of intellectual
disability was classified as biomedical, autism or
unknown.
Results: Overall prevalence of intellectual disability
in WA was estimated to be 17.4/1000 live-births,
of which 16.0/1000 had mild or moderate ID.
The prevalence of autism spectrum disorder was
3.7/1000 live-births with two-thirds of these having an
intellectual disability. The most common biomedical
cause was Down syndrome however in approximately
60% of all cases no known cause was identified.
Implications: The provision of accurate estimates of
numbers of individuals with an intellectual disability
is essential for adequate service planning for this
important group. The ability to link to other datasets
ASID CONFERENCE 2014
31
Abstracts
such as hospitalisations, justice and child protection
enables investigation of the particular needs within
this population.
20. S Gellar
Autism Spectrum Disorders in middle to late
adulthood
Background: ASD has been studied widely in
children and young adults. However, little research
has been conducted into adults over the age of 40.
ASD is now recognized as a lifetime disorder, yet
research into the adult phenotype is severely lacking.
Does the adult phenotype differ? And if so, how? Our
study is part of an international effort to define the
adult phenotype of ASD, and for the first time provide
an estimate of cost for adult ASD in Australia.
Method: The data for this study has been collected
from interviews with family, care providers and adults
over the age of 40 with ASD. Cost of care has been
established from records housed with the Disability
Services Commission of WA, and other government
and NGO organizations.
Results: Preliminary results suggest adults diagnosed
with ASD as children continue to meet criteria for
autism spectrum disorder well into adulthood. The
symptom profile is however susceptible to change
as deficits experienced in childhood may no longer
be an issue in adulthood. Preliminary data collected
on prevalence suggests the known adult prevalence
is significantly smaller than would be expected from
national and international data. Furthermore, cost
estimates are higher for adults than for children.
Implications: These findings show adults with
ASD face different challenges from children. The
prevalence data suggests there are many adults in
WA who are undiagnosed and may not be receiving
adequate support. In addition, our data indicate
adulthood is the most costly age group, despite
being under-recognised and under-researched.
Background: Paperwork forms a large part of daily
service provision in group homes for people with
intellectual disability. Government departments and
disability service organisations perceive paperwork
as an important service technology in the delivery of
quality support to residents. However, the frontline
staff perspective of paperwork is not well understood.
This study aims to explore group home paperwork
from a frontline staff perspective, providing an
alternative perspective to a heavily used service
technology.
Methods: This qualitative project is underpinned with
a constructivist Grounded Theory Methodology, and
uses qualitative data collection and analysis research
methods. Data involves participant interviews and
observations, and researcher journal reflections.
In order to generate theory firmly grounded in the
data, the data collection and analysis process is
conducted iteratively.
Results: Preliminary findings identify factors that
influence both the negative and positive perspectives
of paperwork, and these will form the basis of
discussion in the paper.
Implications: There is a crucial need to understand
paperwork from the perspective of frontline staff, as
this stakeholder group is the major audience and
user of group home paperwork. This perspective
provides insight into the impacts of paperwork
processes on the quality of support provided to
residents.
22.
L Hamilton
Beyond the file note: making group homes genuine
homes
Background: Are group homes workplaces or
genuine homes? Are they organisational assets or
places of belonging and connection? There is a
paucity of research that examines group homes from
the perspectives of people with intellectual disability.
21.
C Quilliam, C Bigby & J Douglas
Method: Ethnographic research was undertaken
over 18 months at Lake House, a group home for six
people with intellectual disability.
A frontline perspective of paperwork in group homes
for people with intellectual disability: Preliminary
findings
Results: Surveillance is part of life at Lake
House; housemates are constantly subject to the
administrative gaze. File notes are used as sanctions
32
ASID CONFERENCE 2014
Wednesday 5 November 2014
of the administration and housemates experience file
notes punitively. A refusal to hang out the washing
can lead to a label of “being difficult” recorded on
file; not obeying a staff member’s request to change
your windcheater can lead to a negative note in
the communication book. A request to buy a softdrink can be refused because it is not a “healthy
choice” and having a sexual relationship with another
housemate can lead to threats of eviction.
Implications: Administrative regimes designed to
protect staff and residents such as quality standards,
health and safety, file notes and operational
procedures can create environments of enclosure
(Deleuze, 1992) where home is prescribed via
machinations of the regime. The development of
genuine partnerships with people with intellectual
disability is urgently required to reconsider the group
home model. The perspectives of people living
in group homes counter the dominant discourses
of service provision and supports people with
intellectual disability to create the lives that they
choose, including creating genuine homes.
23.
R Munn
Children’s Therapeutic Accommodation in action: a
case study from South Australia.
Background: Children under Guardianship of the
Minister often have experienced trauma within
their short lives, and those who also struggle with
the additional needs associated with Intellectual
and other disabilities are even more susceptible
to traumatic experiences due to the additional
obstacles they face on a daily basis.
Method: Cara are supporting four children under
the age of 14 years with a diagnosis of Intellectual
Disability within a therapeutic accommodation
setting. The last 12 months has seen many obstacles
overcome for each child resulting in significant
quality of life advances.
This paper will describe how trauma informed
practices, combined with understandings of
attachment and play theory alongside the
implementation of Active Support practices have
shaped the provision of accommodation support to
children who have been unable to be placed in the
traditional foster care model.
1
Results: The team of Community Support Workers
provide a program of support for the children that
has enabled them to become active members of
their community. This has reduced incidences of
behaviours of concern to a point where children now
can see futures beyond long term care.
Implications: This paper will demonstrate how a
trauma informed and best practices approach to
children and learning can provide an accommodation
experience for children with Intellectual Disability
and trauma that supports their personal growth and
reduces staff turnover and burnout.
24.
N Crates & M Spicer
Trauma Informed Support for people with disability,
compatibility with Positive Behaviour Support and
opportunities to enhance existing practice.
Background: Being a person with an intellectual
disability does not automatically mean that a person
will present with challenging behaviour. Prevalence
rates of mental health disorders in people with
disabilities are significantly higher than the general
population. Indeed, many people with intellectual
disability who present with challenging behaviour
also have a history of trauma and disrupted
attachment. Despite the expanding knowledge base
in relation to the treatment of trauma and disrupted
attachment, there is little discussion of its application
to supporting people with disability with such history.
Method: The authors conducted a literature review
of approaches to treating trauma and disrupted
attachment. They then undertook a mapping process
comparing these approaches to current best practice
responses for challenging behaviour based on
non-linear, multi-element positive behaviour support
(PBS).
Results: Many of the treatment approaches for
trauma and disrupted attachment (regarding
understanding problem behaviour, staff practices
and intervention techniques) are synonymous or
compatible with the best practices in PBS.
Implications: The authors propose that PBS using
the multi-element model is a trauma and attachment
informed approach. Further, being an inclusive
model, trauma informed techniques can be
ASID CONFERENCE 2014
33
Abstracts
embedded within the multi-element support model
(MEM) to deliver trauma and attachment informed
practices for people with intellectual disability.
The MEM provides a framework for applying the
broad range of trauma informed treatment practices
within a holistic treatment planning framework,
providing a cohesive method for integrated support
and treatment where typical ‘language’ based
therapy may not be effective. The MEM also provides
a framework for supervising, supporting and
engaging support staff as the mediators providing
this intervention.
25.
E Walker
All Aboard MS Microboard: how microboards are
used to address the challenges faced by young
adults with complex disabilities, and their families
Background: Microboards offer valuable assistance
to people who choose to self-direct their services. A
microboard
• is a legally recognised organisation set up for the
benefit of one person;
• has 5-8 members who have an unpaid, close
relationship to the person;
• develops and maintains a citizen based network;
and,
• supports a person to retain as much control as
possible.
Microboards have the potential to address issues
associated with staffing, care into the future, and
having a good life. Although well established in
Canada, microboards are new to Australia. This
paper provides an update of research into how
microboards work.
Method: I am using a qualitative methodology
involving interviews and interpretation to deepen my
understanding of six microboards from across British
Columbia and Western Australia.
Results:
• Microboards helped people with complex
disabilities to develop friendships, live in their own
home, and be part of their community.
34
ASID CONFERENCE 2014
• Microboards provide emotional and practical
support to parents.
• Incorporation bestows legal authority, and
contributes to sustainability.
• Members identified the strengths and challenges
associated with microboards.
Implications: Microboards, as a model of support,
have the potential to ensure quality, sustainable care
in all aspects of a person’s life. Information provided
will be useful to anyone considering how to resolve
concerns associated with a person with complex
disabilities living a good life.
26.
P Minnes
Social Participation: the way forward
Inclusive education and community living have
gained general support through government policies
and legislation but it is still not clear to what extent
individuals are actually included and participating
in meaningful ways. The research literature to date
often focuses on the many barriers to inclusion
and participation and the true meaning of these
concepts needs further discussion. The purpose of
this Round Table discussion is to share experiences
of successful inclusion of people with intellectual
disabilities in Australia and overseas. Rather than
focusing on barriers and challenges, this discussion
will focus on strategies that have worked to promote
successful inclusion and participation.
27.
N James
Family carers’ experience of their relative’s need for
admission to an Assessment and Treatment Unit
Background: There is a lack of research that explores
the experiences of acute in-patient admissions
from the perspective of carers of people with an
intellectual disability and professionals. The aims of
this study were:
• To explore family carers’ perceptions of how their
views and opinions were received by professionals
during their relative’s stay in an assessment and
treatment unit.
Wednesday 5 November 2014
• To obtain the views of professionals in relation
to what they consider to be the barriers and
facilitators to addressing some of the experiences
discussed by carers.
This study provides an original contribution to the
understanding of this area of carer experience, from
the perspectives of carers and professionals, and
adds to the wider literature that focuses on exploring
the family carer experience.
Method: The experiences of three mothers and three
fathers were explored via the use of semi-structured
interviews. Interpretative phenomenological
analysis (IPA) was used to analyse the data. Nine
professionals participated in four semi-structured
interviews and one focus group with the data
analysed using descriptive thematic analysis.
Results: Themes from carers exemplify this
experience has influenced their sense of self,
identity, value and importance during the admission.
Professionals identified resources, time, funding,
information provision and attitude as important
factors to support. Key to relationships were effective
communication, collaboration, involvement and the
need to be consistently open and honest.
1
of age with a disability and semi-structured interviews
with hospital social workers and multidisciplinary
team members.
Results: Key characteristics of those long-stay
patients with intellectual disability or cognitive
impairment are reported. Fifteen patients had an
existing intellectual disability. Others with existing
or newly acquired disabilities included patients with
acquired brain injury and other conditions impacting
on cognition. Staff experiences of working with these
patients and ideas for practice improvement are
analysed.
Implications: Better understanding of reasons for
discharge delays and the kinds of difficulties faced
by these patients can assist with the development of
in-hospital services. Staff views about how to better
meet the needs of these patients are discussed
including how to improve practice with families and
carers. Furthermore, this study points to the necessity
of developing appropriate options for people with
disabilities when health conditions, while not acute,
require a level of medical intervention generally not
available elsewhere.
Implications: The results from this study will raise
awareness and help to inform practice by providing
a deeper level of understanding of the experience of
admission to an acute in-patient unit.
28.
J Burton, H Redfern, H Seiffert & B Lonne
Long stays in hospital for people with disabilities: Is
this the right care at the right place?
Background: Being a hospital in-patient can be
a daunting experience especially if discharge is
delayed for an extended period. This paper reports
a practice improvement project at a Queensland
hospital. It describes key characteristics of longstay patients with intellectual disability or cognitive
impairment and examines staff views including how
to address the situation for people who remain in
hospital after needs for acute care are met.
Method: Research methods were an audit of clinical
data of 80 long-staying adult patients under 65 years
ASID CONFERENCE 2014
35
Notes
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36
ASID CONFERENCE 2014
DAY
Thursday 6th
November 2014
ASID CONFERENCE 2014
37
Thursday 6 November 2014
38
1.30 pm
12.30 pm
11.45 am
11.00 am
Rooms
10.30 am
9.45 am
K Arrow, L Hamilton,
R Hitchcock, K Whelan &
A Kokonis
Beyond Yes or No: applying a
continuum of consent to sexual
activity
29.
Patricia Minnes
Keynote 4:
Working with Inclusion International
Room – Orion & Pleiades
Rottnest
LUNCH - Room – Sirius
R Dewar
How I have got two jobs I like.
32.
B Cox
The Information, Communication
& Technology Project - Activ
Foundation
31.
N Davies & A Byrne
Country Towns: an opportunity for
growth, inclusion and real community
involvement
34.
33.
M Long & O King
My Life My Way
Richard Hastings
Room – Orion & Pleiades
2
P Shannon
A Life Without Limits
36.
S Jenkinson, I Mansfield &
D Hoffman
Getting prepared for the health journey
ahead. Are life preservers on board?
35.
Chair: Jennifer Mofflin
Carnac
The family as a context for the behavioural and emotional health of young children with intellectual and developmental disabilities
Keynote 5:
Lived experiences
Chair: Morrie O’Connor
Garden
ASID Members’ Meeting - Room Orion & Pleiades
P O’Brien & M Knox
On becoming an inclusive researcher
30.
Chair: Jill McKenzie
Workshop
King Sound /Admiralty Gulf
MORNING TEA - Room – Sirius
Moving Towards Social Inclusion and Participation of Individuals with Intellectual Disabilities: The Journey Continues.
Room – Orion & Pleiades
Workshop
Orion & Pleiades
Keynote 3:
8.45 am
David Corner
REGISTRATION
8.00 am
ASID CONFERENCE 2014
CLOSE
Conference Dinner - Venue – Red Herring, East Fremantle
7.00 pm
J Butler, C Hinchcliffe & N Crates
The Road to Success - evaluation of
self-advocacy program developed by
Speak Out Tasmania
53.
M O’Connor and D Thomas
People’s Organisations
52.
5.15 pm
A discussion of inclusive experiences
for and by people with intellectual
disability
S Jenkinson, I Mansfield &
D Hoffman
Who is “All aboard” on the good ship
‘Inclusion’?
51.
Roundtable - Room – Orion & Pleiades
H Johnson, C Bigby, D West,
R O’Halloran & E Bould
Communication accessibility issues
of V/Line train travel for people with
disabilities
50.
T De Bortoli & M Arthur-Kelly
Building capacity to maximise
communication with children with
multiple and severe disabilities: A
research agenda
49.
Chair: Ron Regan
Advocacy
A Buchanan, S Peterson, A Barns
& J Bristow
Self-directed early intervention funding:
the parents’ lived experience
44.
R Chalmers
The Audit of Disability Research in
Australia: what does it tell us?
43.
Chair: Denise Whardall
Perspectives
Garden
4.45 pm
K Boxall, R Boycott-Garnett, C
Carter & P Bragman
Sex education for people with
intellectual disabilities in Europe
48.
4.15 pm
K-R Foley, S Girdler, J Downs,
P Jacoby, J Bourke, N Lennox,
S Einfeld, G Llewellyn, T Parmenter
& H Leonard
Family quality of life and day
occupations of young people with
Down syndrome
47.
Chair: Jennifer Mofflin
Chair: Chris Yates
Roundtable
Communication
AFTERNOON TEA - Room – Sirius
S Fisher, C Fyffe, C Bigby& N Rose
Research to Practice: Practice to
Research: what it takes
42.
N Ollington, D Wiggins & A Flack
Evidence-based practices in inclusive
settings: Building towards collaborative
partnerships
41.
Young people
3.45pm
3.15 pm
K Povee
The social construction of ‘Intellectual
Disability’: perspectives of staff
40.
38.
2.45 pm
H Johnson, C Bigby, T Iacono,
J Douglas & S Katthagen
Developing positive relationships
for adults with severe and profound
intellectual disabilities
A Urbanowicz, H Leonard, S Girdler,
N Ciccone & J Downs
Parental perspectives on research into
the communication abilities of those
with intellectual disability: An example
from Rett syndrome.
N Wilson & P Frawley
Supporting the socio-sexual needs
of young men and women with
intellectual disability
39.
37.
Chair: Justin O’Meara Smith
Chair: Laura Hogan
Chair: Allyson Thomson
Rottnest
CommunicationResearch
King Sound /Admiralty Gulf
Relationships
Orion & Pleiades
2.15 pm
Rooms
ASID CONFERENCE 2014
39
S Conn, K Lante, C Kohlenberg,
A Chung & C Arundell
Engagement in physical activity by
people with intellectual disability living
in supported accommodation
55.
J Garriock
‘Outcomes of consequence’ – an
implementation review of the
Comprehensive Health Assessment
Programme for people with intellectual
disabilities
54.
Chair: Ian Pearce
Health
K Bathgate, H Leonard, J Bourke,
K Wong, I Chown & R Steele
Defining and overcoming barriers to
successful breastfeeding of infants with
Down syndrome
46.
K van Dooren, B Kraal, V Popovic
& N Lennox
Improving eRecord systems for people
with intellectual disability
45.
Chair: Nicole Beresford
Health
Carnac
Abstracts
29.
K Arrow, L Hamilton, R Hitchcock, K Whelan & A
Kokonis – Workshop
Beyond Yes or No: applying a continuum of consent to
sexual activity
There is a lack of literature and resources guiding
professionals and carers in the practicality of
discussing consent to sexual activity and current
practice tends to limit this discussion to the choice
between yes and no. The consent continuum is a
new structured approach adapted by the Disability
Services Team at Family Planning which distinguishes
free choice from pressured, coerced, or forced sexual
activity. The framework addresses motivations, feelings
and safety in concrete ways and simultaneously
promotes positive sexual experiences and improves
protection from coercion, exploitation and abuse.
This workshop will give professionals and carers a
way to talk to people with intellectual disability (ID)
about consent to sexual activity. Instead of just seeing
the choice about sexual activity as being a yes or no
decision, the workshop helps professionals and carers
to think about the times that people might say yes to
sexual activity because they are scared or worried
about saying no. The workshop will cover the feelings
people may have before and after these decisions. It
will also cover how people with ID can be supported
and safe with their choices about sex. It is important
that professionals and carers have resources that
help people with ID stay safe and have positive sexual
experiences. The workshop will go for two hours.
There will be activities and discussions so that the
professionals and carers can feel confident to talk
about consent to sexual activity in a way that helps
people with ID.
30.
P O’Brien & M Knox - Workshop
On becoming an inclusive researcher
This workshop aims to provide participants with an
opportunity to learn about and discuss the theoretical
and practical aspects of inclusive research. It will
comprise three sections, each approximately 30
minutes long.
The first section traces the evolution of an inclusive
approach to research, exemplified in both Australian
and international literature. Participants will be
40
ASID CONFERENCE 2014
introduced to a range of perspectives on the
conceptualisation of inclusive research, as well as
arguments for its added value.
In the second section, participants will hear from
members of the Centre for Disability Studies Inclusive
Research Network on a segment of a study, funded by
NSW Consumer Development Fund, they conducted
on the perceptions of people with intellectual disability
on the potential impacts of the NDIS for them.
The third section of the workshop adopts a world
café format, whereby, drawing on their own research
experiences, members of the network will lead three
groups. Respective groups will cover: first, how to
establish and deliver training workshops for people
wishing to work as co-researchers, and ways in
which to decide on research questions people with
disabilities consider meaningful to their lives; secondly,
how to decide on data collection tools and practising
their delivery; thirdly, how to analyse data and then
disseminate findings.
As participants move from one group to the next, they
will be invited to complete their own action plan on how
they might transfer the knowledge gained in the three
discussion groups to their own research interests.
31.
B Cox
The Information, Communication & Technology Project
- Activ Foundation
My Name is Ben Cox and I am a person with an
intellectual disability. I have worked with the Activ
Foundation for last seven years. I have undertaken
administration duties to the central services building
undertaking both Records and IT.
My Career started when I left school at Lemming
Senior High School joined the Activ Foundation in
2006. My Goals was to go from a workshop floor as a
general hand to an administration at Wembley Central
Services.
I was the first person with a disability to work at
Wembley Central Services. Last year I did a talk about
the leaders for tomorrow project which has now come
to an end.
This year I am more focussing about my work life
on one particular subject called the Information
Technology Devices which will be brought out to all
our accommodation houses.
Thursday 6 November 2014
My role in this project is to teach the clients how to use
their own devices and give some guidelines on safe
use.
33.
This Project is run by Activ Foundation ICT and funded
by the Independent Living Centre.
My Life My Way
32.
R Dewar
My employment journey to getting two jobs I like.
It is hard for young people when they leave school
to get a job they like but it is harder if you have a
disability. I want to share my experience of how at the
age of 20 I have two awesome jobs one in hospitality
and the other is public speaking to help other people
with disabilities get a job they like.
The key messages I want to tell people about how to
get a job are:
• Everyone has talents and gifts which can be used to
turn into finding a job.
• Self-belief is important
• Belief of people around you is important
• It is important that you tell people what they are
good at as they don’t always see it themselves.
• It is important that you have people outside your
families and friends to talk to and provide support
• It is important to continue to look at ways of
continually improving skills to find a better job
• It is important if you have a disability to sometimes
share with your work mates that your disability may
cause you to behave differently sometimes from
what they may expect.
Presentation overview: At age ten I was diagnosed
with Asperger’s syndrome. On top of Asperger I also
have Low Muscle Tone a learning disability and slow
deployment. When I was 14 I got my mother got
me my first job at Gloucester Park which my Mother
helped me get. This year I gained employment at
Crown Perth which was my goal. I want to share my
journey on how I achieved my goal.
A couple years ago someone told me I would be
good at public speaking so I thought I would give it a
go. I have had a number of gigs and I am working on
improving my skills at presenting. One day I want to
travel with my public speaking.
It is awesome that I now have two jobs as I enjoy
working. Working is important to me and it is pleasure.
2
M Long & O King
When I knew I wanted to move out of home, I knew I
didn’t belong in a group home, but I also didn’t want to
live alone. I wanted to live like the people I see on TV,
in a fun and dynamic environment with housemates
and freedom. I know there are some things that I need
help with, but they are only small things.
Then I found Kardinya.
The Kardinya House model and team demonstrates
beautifully how person centred practices can create a
culture which enables people living with an intellectual
disability to direct their own lives.
If you imagine a life which is built on making your own
decisions about what you want to do and when you
want to do it. If you could share these choices with
your friends and families and if you could do this in a
way that is encouraged and facilitated by the people
that support you - then you begin to understand what
living at Kardinya House means. Now add to this staff
and volunteers that are committed to person centred
practices and actively supporting you in accessing
a community that embraces you, then you start to
understand life at Kardinya for us - 6 young adults.
Kardinya House is a pilot, which uses a concept
that whilst not unique, has determinedly used the
philosophies of person-centred practices to create
a culture of inclusion and choice and its success
demonstrates that changing the mindset and practices
can create cultural change.
34.
N Davies & A Byrne
Country Towns: an opportunity for growth, inclusion
and real community involvement
Background: Traditionally, when looking to move out
of home, many service users who live in regional areas
feel they have no choice but to move to the city. Often
this isn’t the best choice and can cause issues of loss
for the family and the community in which the person
has lived. It is also often argued that regional towns
don’t provide adequate services or fail to connect
with people living with intellectual disabilities. This
is my story of how this isn’t always true and how my
community has included me in all aspects of my life
ASID CONFERENCE 2014
41
Abstracts
and provided me the opportunities I may not have had
if I lived elsewhere.
Method: Through my links in the community that have
been created throughout my life, myself and the other
people accommodated by my service provider have
been able to be active contributors within community.
Through living where I do, myself and the people I
live with have been given opportunities that may not
have been readily given had we lived elsewhere. An
example of this is a local business allowing us to do a
regular walking of the dogs they look after and have for
sale.
Results: Where I live is approximately two hours’
drive from South Australia’s capital city and the next
closest disability service provider is based an hour
away. In the beginning people were told they would
have to leave to gain accommodation, but thanks
to community lobbying housing was set up within
my town. This was the beginning of our community
showing support to us and it continues to build in
many ways that I want to tell you about.
Implications: Our story is a positive one for rural
communities and can hopefully show others what can
be achieved through strong community links.
35.
S Jenkinson, I Mansfield & D Hoffman
Getting prepared for the health journey ahead. Are life
preservers on board?
Background: People with intellectual disability are
living longer with better care and support. This also
means they are experiencing the effects of age related
disability just like the rest of the population. However
for people with disability this also means a change in
support is required.
Introduction: Ian and David are good friends who are
looking out for each other. They have both lived with
a high degree of independence. Over the last 2 years
they are experiencing health issues related to aging
and this is having an impact on their lives and the
support required. There have been changes required
at home and at work. There have been changes
required in what they can expect of themselves as
their health has changed. Research presented at
previous ASID (Rafat Hussain, Helen Edwards, Stuart
Wark, 2010) and IASSID (Evenhuis, H., Henderson,
C.M., Beange, H., Lennox, N., & Chicoine, B. (2000))
conferences have identified that age related health
issues for people with intellectual disabilities include
42
ASID CONFERENCE 2014
access to services, extra support, and access to
health promotion. The barriers and potential barriers
identified by Ian, David and Samantha show that in
Australia there are issues of access to age related
supports and services, extra support from disability
specific support and still many questions about
how the NDIS, HACC services and disability service
providers will work for people with disability who are
ageing.
Implications: There needs to be a better understanding
of what changes in support happen as people with
intellectual disabilities age and encounter the normal
range of health issues to do with ageing. Service
systems must be better prepared at all levels to
support people as and when required.
36.
P Shannon
A Life Without Limits
When those around you say you cannot, it is up to the
determination inside you to tell them you can. Rather
than focus on one’s inability, the focus instead should
be on one’s ability. We are at an important time in
which society is beginning to recognise this fact, a
perspective that is especially relevant to people living
with disabilities.
My name is Phillip Shannon and I was born with a
disability. I wish to share my own personal story about
the challenges and struggles I have faced. Life is good
for me right now. But a time ago, things were not so
favourable. My story will speak to anyone who has ever
been homeless – a cold, dangerous, and difficult place
to be. It will relate to those who have faced health
problems as I recall a terrible night in which I was
taken to hospital by ambulance. But most significantly,
my story will be recognised in the challenges many
of us face through intellectual disability and mental
health.
Despite these struggles that so many others share,
I have pushed through and tried to do the best with
my life. I have overcome adversity with a long list of
achievements. What keeps me going is my goals,
passion and focus on my abilities. As such, my mission
is to promote, inspire and empower people with
disabilities to live a great life without limits and achieve
their goals. I am standing for the rights of people with
disabilities in society. I aim to inspire others to accept
people who are different and to recognise that we
have a lot in common. We are all trying to do our best
with our lives.
Thursday 6 November 2014
37.
N Wilson & P Frawley
Supporting the socio-sexual needs of young men and
women with intellectual disability
Background: People with intellectual disability (ID)
have long been seen as either asexual or hypersexual
which affects the type and amount of support they are
offered in this area. Young adults with ID transitioning
to adulthood typically miss out on the same sociosexual education as their non-disabled peers. We
need to better understand how to support young
adults with ID during this transition to help them avoid
the unwanted sexual experiences and difficulties
negotiating safe and fulfilling relationships. This
research explored the kind of supports young adults
with ID want during this transition and the types of
support that work well and don’t work so well.
Methods: We conducted 4 separate focus group
interviews with young men (n=14) and young women
(n=11) with ID. We also conducted 3 separate focus
group interviews with disability transition staff (n=17).
Data were analysed using the constant comparison
method of grounded theory.
Results: Young people with ID want to develop
relationships, but gendered messages about
sexual safety lead to a fear-based and risk-aversive
lifestyle that, through socio-sexual regulation, deny
opportunities to rehearse and hone knowledge about
sex.
Conclusions: Future in-depth research needs to
explore the perceptions, expectations and concerns
of parents and other unpaid caregivers. We need to
develop and test socio-sexual interventions that will
not only offer increased socio-sexual knowledge,
but also the social context in which to rehearse and
hone this knowledge. Demand for places in similar
accommodation will increase, adding to the existing
burden on service providers. There was substantial
use of medical services, and the need for more
extensive hospital care is also predicted to grow with
the onset of age-associated disorders.
38.
H Johnson, C Bigby, T Iacono, J Douglas & S
Katthagen
Developing positive relationships for adults with
severe and profound intellectual disabilities
2
Background: The aim of this study was to increase
the capacity of direct support staff to understand
and facilitate social relationships with people with
intellectual disability and little or no speech with both
themselves and with others in the community. The
intervention was based on a theoretical model of
processes in positive relationships developed in an
earlier study
Method: Nineteen staff members and five adults with
intellectual disability participated. A Multiple Baseline
Design, across three day services, was implemented.
Observational data (104 hours) of interactions
between staff and focal participants were obtained
using momentary time sampling and field notes. Staff
participants also completed two questionnaires and
participated in interviews. The intervention comprised
four staff workshops on four processes, recognising
the individual, sharing the moment, connecting and
sharing the message.
Results: Pre and post comparisons of the data
showed individual variability resulting in different
intervention effects across services. Changes
varied in relation to staff member, activity and
communication skills of the service user. The
positive changes in social interactions demonstrated
increased engagement with increases in the
processes connecting and sharing the message.
These observations were verified through interview
report.
Implications: The results point to complexities
involved in data collection on social interactions in
day services and indicate the benefits of facilitating
social engagement through short term training in
group based program settings.
39.
A Urbanowicz, H Leonard, S Girdler, N Ciccone
& J Downs
Parental perspectives on research into the
communication abilities of those with intellectual
disability: An example from Rett syndrome
Background: It is generally accepted that the
perspectives of parents are integral in the
assessment of communication abilities of individuals
with a severe physical and intellectual disability.
Although numerous studies have investigated
parental perspectives on communication abilities
of children with disabilities such as Down
ASID CONFERENCE 2014
43
Abstracts
syndrome or cerebral palsy, the perspective of
parents with a daughter with Rett syndrome, a rare
neurodevelopmental disability associated with
numerous physical limitations and impairments in
language, have not been described in detail. This
study described from the perspective of parents, how
females with Rett syndrome communicate in everyday
life and the barriers and facilitators to successful
communication.
Method: Sixteen semi-structured interviews were
conducted with parents whose daughters were
aged from two to 29 years, had varying functional
abilities and were registered with the Australian Rett
Syndrome Database. Interviews were recorded and
transcribed verbatim. Transcripts were analysed
using directed content analysis.
Results: All parents reported their daughters were
able to express discomfort and pleasure and make
requests and choices using a variety of modalities
including vocalisations, body movements and
eye gaze. Parents also reported their daughters
understood most of what they said and the level
of functional abilities, such as mobility, and
environmental factors, such as characteristics of the
communication partner, influenced the success of
communication.
Implications: Health and teaching professionals
need to consider the parental perspective when
assessing communication abilities and developing
communication interventions for girls and women with
Rett syndrome.
40.
K Povee
The social construction of ‘Intellectual Disability’:
perspectives of staff
Background: In this study I explored the social
construction of ‘intellectual disability’ from the
perspective of the staff who work with people with
intellectual disabilities.
Method: An Advocacy Agency participated in the
study and unstructured interviews were conducted
with five staff members. Interview transcripts were
analysed using causal layered analysis, a multilevel
analysis that enables the factors that perpetuate
social issues to be identified through the interaction
of several levels of understanding.
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ASID CONFERENCE 2014
Results: The exclusive grouping of people with
intellectual disabilities and the diagnosis of
intellectual disability were issues raised by most of
the staff. The impact of the visibility of the intellectual
disability (or stigma) was explored, as was the
discourse surrounding ‘difference’. Staff identified
that the Members of the agency with intellectual
disabilities often ‘pushed the boundaries’ of
societal expectations just by ‘apparently feigning’
‘normality’. Another theme discussed the limited
opportunities afforded to Members and revealed
that this was legitimised by the assumption that
people with intellectual disabilities are happy and
have a “bloody good life”. Imposed identities were
identified; ‘the deviant’, ‘the eternal child’ and
‘the intellectually disabled’, a consuming master
status. The opposition and discomfort surrounding
the exclusive grouping of people with intellectual
disabilities was examined, revealing an interesting
paradox; we (society) want you to be independent
and autonomous but as defined by us.
Implications: Constraints are placed on the lives
of people with intellectual disabilities which are
unwarranted given their actual impairment. The
findings of this study can inform the practices of
disability service providers.
41.
N Ollington, D Wiggins & A Flack
Evidence-based practices in inclusive settings:
Building towards collaborative partnerships
Background: The adoption and implementation
of evidence-based practices in inclusive settings
requires an understanding of the translation of
research into practice, as well as an understanding of
the way in which practitioners can inform and guide
research. Using a translational science framework
to address issues and barriers to evidence-based
practice including translation, and implementation,
the current work aims to bridge the gap between
those who conduct research or generate knowledge,
and those who use evidence-based information in
practice.
Method: A basic training (workshop) approach was
implemented in Southern Tasmania. Pre and postworkshop surveys were administered.
Results: A model was developed for the promotion
of skill development and collaborative research
Thursday 6 November 2014
2
partnerships between researchers/academics and on
the ground/support workers. The model identifies the
skills necessary to discover and appreciate relevant
research findings, to realise opportunities for the
communication of research ideas, and to incorporate
new findings into practice; that is, the awareness to
adapt guidelines and strategies for a ‘good fit’ with
the environmental context.
be able to demonstrate how they provide support
which achieves specific outcomes, rather than just
makes claims based on their own perspectives. The
NDIS will expect information about organisational
performance. This paper will give an outline of
a program logic and accompanying system of
collecting data about program outcomes which
moves from monitoring compliance to outcomes.
Implications: The education and training model shows
promise towards the enhancement of the application
of evidence-based practices in inclusive settings.
43.
R Chalmers
42.
S Fisher, C Fyffe, C Bigby& N Rose
Research to Practice: Practice to Research: what it
takes
Background: As part of a service redevelopment
initiative by the Tasmanian state government, Veranto
won the tender for the Seniors Lifestyle Options
program and took over responsibility for it in March
2011. The program elements were initially described
as: person centred thinking; a flexible model of
support; use of person centred active support
and positive behaviour support; an action learning
framework for continuous improvement. The program
aimed to create daily support for older people where
by the activities, pace and pattern of their day were
flexible and determined as much as possible by the
individual needs and preferences of each individual.
The Audit of Disability Research in Australia: what
does it tell us?
The current national interest in the reform of the
disability services system has brought a renewed
focus on research that focuses on matters related
to people with disability. Questions are being raised
about the level, intensity and appropriateness of
research in Australia to support reform and innovation
in the field of disability.
In June 2012 a working group linked to the Council
of Australian Governments (COAG) funded an audit
of disability research in Australia. The audit was
undertaken over a twelve month period by the Centre
for Disability Research and Policy at the University
of Sydney with team members from People with
Disability Australia, National Disability Services and
the University of Melbourne. Professor Gwynnyth
Llewellyn was the lead researcher.
Method: A program logic (or program design
statement) that captured the organic method of
individual and program planning adopted by the
program, was written by Veranto staff, with the
support of two external consultants, through a series
of workshops, review of documents and observations
of day to day practice. Based on this a system was
developed and trialled to collect regular client level
data that provided evidence to support beliefs that
the program was offering flexible individualised
support for older people that reflected their
preferences and improved their lives.
The main aim of the audit was to produce a report
that provides a comprehensive picture of the current
state of disability research in Australia.
Results: Initial data about program outcomes will
be presented using individual case studies, and
a detailed description of the program logic and
data collection system will illustrate the distinct
components of these.
44.
Implications: Increasingly service providers need to
The report, which has just been released, is an
important resource for the disability research
community and offers valuable recommendations to
guide and stimulate research initiatives.
This presentation will consider the implications of the
audit findings and recommendations for the future of
disability related research in Australia.
A Buchanan, S Peterson, A Barns
& J Bristow
Self-directed early intervention funding: the parents’
lived experience
ASID CONFERENCE 2014
45
Abstracts
Background: Consumers of services are
increasingly being provided with opportunities
to self-direct and manage their funding with the
aim of achieving more personalised and effective
outcomes. Self-direction and managing of funding
for early childhood (ECI) intervention services by
parents of children with intellectual disability is
being trialled as an alternative approach for families
who would have only previously been offered block
funded government services. The research was
exploring - what is the lived experience of parents,
caring for children (aged 0 - 6 years) living with
disabilities, who are using self-directed and shared
management ECI funded services to meet their
child’s intervention needs.
Method: Forty families who chose to self-direct and
manage their funding were invited to participate in
this mix methods study. Families were interviewed
regarding their lived experiences and completed
two measure measures considering empowerment
and resilience. Participants agreed to be
interviewed three times at six month intervals.
Results: Initial results of the study have identified
there major themes – the importance of the
families general lived experience at the time of
commencing self-management, understandings
and expectations of self-management, and
previous service experiences. Details results will
be provided.
Implications: The results of this study will have
particular significance as funding models for
people with disabilities and their families are
rapidly moving to approached of self- direction and
self-management. Understanding parents’ lived
experience of self-direction and management will
assist in future service design and delivery.
45.
K van Dooren, B Kraal, V Popovic & N Lennox
Improving eRecord systems for people with
intellectual disability
Background: The introduction of eHealth records
represents the potential to improve health-related
outcomes for many Australians by improving
accessibility of health information. Although little
is known about how Australian consumers will
actually use eHealth records, international research
suggests that using patient-controlled health
46
ASID CONFERENCE 2014
records is especially problematic for disadvantaged
populations.
Methods: Using a local eRecord system as a case
study, we aimed to describe the barriers and
facilitators to uptake of eRecords in a manner that
improves the lives of individuals with intellectual
disability. Over six months, we conducted qualitative
interviews with organisations, eRecord developers
and, critically, those individuals and their carers for
whom the system was developed.
Results: Based on a thematic analysis and
triangulation of qualitative data, we developed a
model of system use that allows us to identify barriers
and facilitators to eRecord system use by people with
intellectual disability.
Implications: Our findings provide important insights
both for the eRecord system under scrutiny and for
the national PCEHR system currently being rolled out
by the Australian Government.
46.
K Bathgate, H Leonard, J Bourke, K Wong,
I Chown & R Steele
Defining and overcoming barriers to successful
breastfeeding of infants with Down syndrome
Background: Breast milk is recognised as the optimal
food for infants. Breast milk and breastfeeding
can give additional benefits to infants with Down
syndrome by protecting against increased risk of
infection and stimulating muscle control. Despite the
benefits, little is known about the Australian mother’s
experience of breastfeeding an infant with Down
syndrome. The aim of this research is to describe the
rates of breastfeeding in mothers of infants with Down
syndrome, barriers experienced and how they were
overcome.
Method: In 2011, 197 parents of a son or daughter
with Down syndrome aged between 15 to 31 years
living in Western Australia completed a questionnaire
that included questions on how their son or daughter
was fed as an infant, how long any breastfeeding
continued, problems experienced with breastfeeding
and support received or desired.
Results: In total, 81% of mothers initiated breastfeeding with 62% of infants exclusively breastfed
in the first week. All mothers who did not initiate
breastfeeding and 57% of mothers who did initiate
Thursday 6 November 2014
breastfeeding experienced problems, with the main
barriers being poor sucking, medical complications
and infant lethargy. Health professionals, including
medical staff, nurses, midwives and lactation
consultants were the most frequently cited support.
Implications: Most mothers of infants with Down
syndrome successfully initiated breastfeeding
however the rate of exclusive breastfeeding was
lower than in the general population. Parents and
health professionals need to be aware of the benefits
and barriers to breastfeeding to support new mothers
of infants with Down syndrome.
47.
K-R Foley, S Girdler, J Downs, P Jacoby, J Bourke,
N Lennox, S Einfeld, G Llewellyn, T Parmenter
& H Leonard
Family quality of life and day occupations of young
people with Down syndrome
Background: Family quality of life is an important
outcome that needs to be considered when support
is being provided to families with a young person
with an intellectual disability. The transition from
school to adulthood is a crucial time and the lack
of post-school options has been shown to have
negative implications for the whole family in terms of
satisfaction and family adjustment.
Method: In 2009 questionnaires were completed
by 203 families (88.6% of those contacted) with a
young person with Down syndrome aged 15 to 32
years participating in the Down syndrome “Needs
Opinions Wishes” study at the Telethon Kids Institute.
Data collected included the young person’s day
occupations as well as family characteristics such as
income, family and community supports and quality
of life.
Results: About a quarter of the 150 young people who
had left school were working in open employment
and 40% in sheltered employment, while 10% were
participating in training options and a quarter in
day recreation programs. Families of young people
participating in sheltered employment tended to
report poorer family quality of life than those of young
people attending open employment, after adjusting
for personal characteristics, behaviour and income.
Implications: Participation of young people with
intellectual disability in open employment may
positively influence family quality of life. However we
2
can only speculate about the mechanisms through
which this occurs.
48
K Boxall, R Boycott-Garnett, C Carter
& P Bragman
Sex education for people with intellectual disabilities
in Europe
Background: The Sex Education and Disability
(SEAD) Project has been working with adults with
intellectual disabilities, their parents and staff to try
and understand people’s questions and concerns
about sex education in six different European
countries.
Method: Project partners from Germany, Hungary,
Finland, Lithuania, the Netherlands and the UK have
been doing research in their own country, finding
out about how sex education is taught to adults with
intellectual disabilities and asking if people would
like things to be different. They have done this by
researching government papers and interviewing
people with intellectual disabilities, their parents and
staff.
Results: Our project is only half-way through. So far,
we have tried to answer these questions: How can
we talk to each other about sex education? How can
we collect data (information) across six European
countries? How can we make an accessible
summary of what we found out? We found it was
difficult and embarrassing for people to talk about
sex and sex education but there are ways of making
it less embarrassing (for example, using puppets or
life-size dolls).
Implications: More and more adults with intellectual
disabilities are living in community settings (within
and beyond Europe) and forming relationships. It’s
important to talk to people about sex education
and to try and find ways of doing this that are less
embarrassing.
The SEAD Project is funded by the European
Commission Grundtvig programme.
49.
T De Bortoli & M Arthur-Kelly
Building capacity in families and communities to
ASID CONFERENCE 2014
47
Abstracts
maximise communication with children who have
multiple and severe disabilities: A research agenda
Background. Communication is crucial to the
participation of children with multiple and severe
disabilities (MSD) in everyday life. Research has
identified the central role of families in supporting
the communication opportunities of these children,
yet little is known about their experiences of
communicating, their support needs, or the barriers
they face. With the introduction of the National
Disability Insurance Scheme (NDIS), families will
gain greater say over the support they receive, and
services such as speech pathology will no longer
be delivered in segregated settings but in children’s
natural environments.
Method. This paper presents an argument for
a research focus, employing qualitative and
participatory action research on: (i) the range of
facilitators and barriers to the communication of
children with MSD from the perspectives of the
children themselves and significant people in their
lives; parents, siblings, peers/friends, neighbours/
other community members and educators, and (ii)
the development and implementation of approaches
to empowering families and communities to build
their capacity to maximise the communication
opportunities and participation of their children with
MSD.
Results and Implications. The findings of such
research will contribute to designing and
implementing appropriate inclusion-based, familycentred supports for maximising the communication
opportunities and participation of children with MSD.
It will contribute to new knowledge and skills needed
by families and communities to navigate the changing
environment created by the introduction of the NDIS.
50.
H Johnson, C Bigby, D West, R O’Halloran
& E Bould
Communication accessibility issues of V/Line train
travel for people with disabilities
Background: Transport accessibility has focussed
on physical access and neglected many issue
relevant to people with intellectual disability. This
study systematically investigated the communication
barriers and facilitators of services to customers of a
mainline rail company (V/Line) in Victoria, Australia.
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ASID CONFERENCE 2014
Method: Twenty five interviews and five focus
groups were conducted with 12 customers with
communication difficulties and 13 staff, and an online
survey completed by 111 front line staff. Data were
analysed thematically and with descriptive statistics.
Results: The focus group and interview data revealed
generally positive attitudes by staff towards the
customers with a disability. The survey data from
front line staff reflected these findings showing
a degree of comfort in their interactions with this
group. Both groups identified the need for a greater
variety of interactive communication tools, strategies
for customers needing assistance and education
programs. Customers recommended infrastructure
changes including improved signage, and multiple
ways to receive or access information.
Implications: Considerable potential exists to
utilise the generally positive staff attitudes towards
people with communication, strengthen customer
service and reduce barriers to communication
through the greater use of communication tools by
staff, more targeted training in communication and
adaptation of signage, and written printed or on line
communication.
51.
S Jenkinson, I Mansfield & D Hoffman Roundtable
Who is “All aboard” on the good ship ‘Inclusion’?
Background: Inclusion for a person with intellectual
disability is about feelings of friendship and having
a choice to be with all sorts of people that you
feel included by, whether that is other people with
disability, friends, family, community groups etc. It
is much more than where you do things. Flexible
support and inclusion should include peer support.
Peer support is often about bringing together people
with the same type of disability, yet there is a lot
that people can learn from other people who have
experienced the same barriers and attitudes.
Purpose: People with disability will talk about what
they think “All Aboard” means. People will give
examples of when they have felt included. People will
give examples of times they have shared information
and experiences with other people with disabilities.
Everyone will have a chance to say how they meet
friends, how they have felt included, and when they
have felt supported. The group will find out what can
Thursday 6 November 2014
be good about people with disability talking to each
other and learning from each other.
A round table allows the presenters/hosts to give their
experience and then ask others to share theirs. There
will be a series of questions the presenters will put to
the round table to explore inclusion and peer support
from both a theoretical and practical perspective. The
hosts will speak first answering the question “Who
is All Aboard? And What does the theme All Aboard
mean to them? Others at the table can then contribute
with their answers and answer further questions such
as Where do you find friends? Who have you gotten
the most useful information from? How can talking
to other people with disabilities encourage inclusion
in mainstream activities? Why is it important to be
included?
Implications: Exploring this topic is important
for recognising the expertise of peoples lived
experience. A potential impact may be for there to be
more opportunities for peer support as valid learning
experiences, and that peer support is connected to
experience not just disability type.
52.
M O’Connor
People’s Organisations: People with Intellectual
Disabilities developing their own housing/employment
and related resource groups
Background: People’s Organisations, also known
as mutual support groups or co-operatives are a
rarity in the disability field although a mainstay of
developmental practice. This paper contends that
People’s Organisations have a significant role to play
in improving the social and economic conditions of
people with Intellectual Disabilities and that the NDIS
should offer opportunities for people with Intellectual
Disabilities to create People’s Organisations.
Method: Case study of three People’s Organisations,
mutual support groups established by people with
Intellectual Disabilities. A housing company, a
workers’ co-operative and a musical group operating
under sponsorship.
Results: Drawing on the work of Concetta Benn/Tony
Kelly and Ingrid Burkett the three case study groups
have utilised a ‘Capacity Building Framework’ that
has led to success in social and economic inclusion.
2
of a Capacity Building Framework are a vehicle for
social and economic inclusion. The NDIS should
offer new opportunities for People’s Organisations of
people with Intellectual Disabilities
53.
J Butler, C Hinchcliffe & N Crates
The Road to Success - evaluation of self-advocacy
program developed by Speak Out Tasmania
Background: Capacity to be self-determining is
critical for individuals to negotiate a plan that truly
supports their goals and aspirations under an
NDIS. Wehmeyer et al (1997) demonstrated high
capacity for self-determination in adolescence had a
correlation with an individual’s employment and social
outcomes. This paper will report on the effectiveness
of the Road to Success.
Method: The Road to Success is a self-advocacy
training program designed for people with intellectual
disability. Following a review of self-advocacy training
and materials within Australia and overseas the
program was developed utilising some aspects of
this and new information and activities developed by
Speak Out self-advocates. The Road to Success is
co-facilitated by self-advocates and uses the analogy
that self-advocacy is a journey with the destination
being empowerment and control over one’s own life.
Prior to commencing the program the 5 participants,
people with intellectual disability, completed subtests
of the ARC Self Determination Scale (Wehmeyer
et al 1995). At the completion of the program they
repeated the scale in order to evaluate effectiveness.
Results: The results evaluate the effectiveness of this
group based program in terms of capacity for selfdetermination as assessed on a quantitative tool.
Participants also reported qualitative outcomes; these
will be discussed by one of the participants
Implications: Given the opportunity individuals can
improve their ability to be self-determining. The focus
of the NDIS is on providing support to individuals that
enables them to achieve their goals and aspirations
therefore evidence based programs that increase
capacity for self-determination are essential.
Implications: People’s Organisations operating out
ASID CONFERENCE 2014
49
Abstracts
Thursday 6 November 2014
54.
J Garriock
‘Outcomes of consequence’ – an implementation
review of the Comprehensive Health Assessment
Programme for people with intellectual disabilities
Background: The main findings of the Ministry of
Health’s ‘Health Indicators report for people with
Intellectual Disability (2011)’ were that these people
were worse off in terms of their health and life
expectancy, had higher rates of health problems
and used health services more than the general
population.
Method: In 2009, Spectrum Care implemented a
Comprehensive Health Assessment Programme
(CHAP) for people accessing residential services.
This paper evaluates the implementation to establish
whether the initial aim has been met and to identify
disparities which may hinder further improvement of
this group’s health outcomes.
Results: The CHAP implementation was successful,
as evidenced by the 20 percent average increase
in the identification of health conditions, health
screening and specialist referrals. However, there
were still evident gaps in the appropriate health and
syndrome-specific screening for people over 40, and
the referrals for breast and prostate screening were
still below expected levels.
Implications: The general practitioners’ (GP)
acceptance of the CHAP improved with each annual
assessment. However, a need for a specialist clinical
resource was identified as providing a higher level of
health advocacy and clinical support for people and
staff when interfacing with the GP.
This and other information gleaned from the
implementation review, including costs, required
funding and the initial impact of a dedicated clinical
nurse specialist, will be presented.
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2
55.
S Conn, K Lante, C Kohlenberg, A Chung
& C Arundell
Engagement in physical activity by people
with intellectual disability living in supported
accommodation
Background: There is evidence to show that people
with intellectual disability (PWID) have low levels
of engagement is physical activity. There is no
documented evidence of the levels of engagement
in physical activity by PWID residing in New South
Wales, government supported accommodation. The
risks associated with low levels of physical activity
increase over time and include risks of falling, loss
of mobility and the development of preventable
conditions including diabetes and obesity. This pilot
study looked at current factors that impact on the
engagement in physical activity.
Method: Focus groups were conducted with people
who reside in supported accommodation in regional
and metropolitan Sydney and with the people
who support them. Qualitative analysis was used
to examine the participants’ attitudes and beliefs
towards and the importance of engaging in physical
activity.
Results: Preliminary results suggest that the
engagement in physical activity of PWID in this
study can be dependent on staff attitudes, risk
management and knowledge of resources and
strategies. Motivation (of staff and residents),
purposeful activities and flexibility in staffing and
accountability were key issues raised.
Implications: A multi model approach to improve
engagement in physical activity needs to occur. This
should include increasing awareness around physical
activity, the development of resources and the
sharing of ideas and knowledge around strategies.
Importantly the promotion of physical activity within
the resident’s lifestyle plan is seen as a way forward
to promote sustainable activity.
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ASID CONFERENCE 2014
51
Annual Australasian
Society for Intellectual
Disability Conference
Making it real ... together
Save the Date!!
11-13 November 2015
Crown Promenade Southbank, Melbourne
A platform for delegates to come together and explore what is means to
convert recent advances in disability legislation and policy into real and
meaningful changes for people with intellectual disability.
The conference will bring together a range of stakeholders: people with
intellectual disability and their families and support persons, coordinators,
disability support workers, researchers from universities, health
professionals and policy makers, to share and prompt new ideas around
the idea of collaboration and inclusion.
Making it real ... together.
www.asid.asn.au
52
ASID CONFERENCE 2014
DAY
Friday 7th
November 2014
ASID CONFERENCE 2014
53
Friday 7 November 2014
54
`
Innovations in Autism research – Launching into the adult space
Room – Orion & Pleiades
Torbjorn Falkmer
Keynote 8:
D Fagan
Justice for Autism: a targeted training approach for
the criminal justice sector
60.
M Mansour
Declared Places: declaring and meeting the needs of
the accused with intellectual or cognitive disability
59.
S Boulter
Legal advocacy for people with an intellectual
disability
58.
1.45 pm
57c. Emotional functioning in youth with
developmental disabilities and significant
emotional or mental health difficulties.
57b. Use of intranasal/oral Midazolam for primary
health intervention when faced with challenging
behaviours.
57a. Reducing the gap with the GAP Program at
the Centre for Disability Health, South Australia.
Inclusive healthcare in South Australia: Engaging
with complexity
J Curran, M Kyrkou, K Rye, J Entwistle, C
Maher, M Usman, S Cama & C Mushan
57.
LUNCH - Room – Sirius
56.
M Cuskelly, K Moni &
C Leggatt-Cook
Constructing futures: Aspirations
and expectations of young
adults, their parents and service
providers.
56a. Enhancing future trajectories
for young adults with intellectual
disabilities: Family aspirations and
implications for service provision.
56b. Perspectives of support staff
on the likely futures of adults with
intellectual disability.
56c. Building research capacity
and culture: Strategies and
challenges within a large nonGovernment organisation.
12.45 pm
12.15 pm
11.45 am
11.15 am
3
C Bigby, E Bould & J Beadle-Brown
Quality of life for people with intellectual disability in
group homes: What makes a difference?
63.
C Bigby, M Knox, J Beadle-Brown & E Bould
Identifying good group homes for people with severe
intellectual disability using a Quality of Life framework
62.
S Thoresen, E Cocks & R Parsons
Employment and related economic outcomes for
apprenticeship and traineeship graduates with disability:
findings from a three year longitudinal study
61.
Chair: Ron Regan
Chair: Morag Budiselik
Carnac
JusticeAdulthoodd
Rottnest
SymposiumSymposium
King Sound /Admiralty Gulf
MORNING TEA - Room – Sirius
10.45 am
Rooms
Melbourne Promotion - Room – Orion & Pleiades
Orion & Pleiades
Glynis Murphy
Community-based treatment options for people with intellectual disability who break the law
Room – Orion & Pleiades
Keynote 7:
The management of epilepsy in people with an intellectual disability – it is rocket science
Room – Orion & Pleiades
10.30 am
9.45 am
Keynote 6:
9.00 am
Mike Kerr
REGISTRATION
8.00 am
ASID CONFERENCE 2014
5.00pm
3.30 pm
3.00 pm
2.30 pm
Rooms
ART EXHIBITION
Venue – Central Park Building, Perth
“As We Are”
CLOSING CEREMONY``
Room – Orion & Pleiades
J Fairthorne, G Hammond,
N De Klerk & H Leonard
Exploring the risk factors for disability
using linked health data
69.
J Man, M Kangas, J Trollor &
N Sweller
Current clinical attitudes and practices
of psychologists working with adults
with dual disabilities: a National survey.
68.
Chair: Morag Budiselik
Health
Rottnest
A Jobling
Enhancing post-school literacy
education programs for young adults
with intellectual disabilities.
71.
D Casey
Who will make decisions for your child
when they turn 18?
70.
Chair: Stian Thoresen
Adulthood
Garden
C Fyffe, L Raskin & D Leighton
Steps towards friendships –
implementing a leisure buddy program
73.
S Waller & J Verjans
As We Are: a West Australian
community initiative bringing joy and
wellbeing to the lives of artists who
have an intellectual disability
72.
Chair: Morrie O’Connor
Leisure
Carnac
www.asid.asn.au
11-13 November 2015 - Crown Promenade Southbank, Melbourne
Annual Australasian Society for
Intellectual Disability Conference
E Walker, F Crawford & H Leonard
Seeking belonging: how parents of
daughters with Rett syndrome facilitate
friendship and community involvement.
67.
65.
R Hussain, T Parmenter, M Knox, M
Parmenter, S Wark &
M Cannon-Vanry
Ageing-in-Place: perceptions of
people with intellectual disability and
those without lifelong disability in rural
and metropolitan NSW
J Goodwin, P Strutt, T Dudding-Byth
& L Campbell
Psychological growth inparents of
children with genetic neurodevelopmental
conditions: preliminary results.
C Bigby
Perspectives on ‘Supported Living’
from people with intellectual disability
66.
Chair: Nicole Beresford
Chair: Sharon Brandford
64.
Parenting
King Sound /Admiralty Gulf
Community involvement
Orion & Pleiades
Making it real ... together
ASID CONFERENCE 2014
55
Abstracts
56.
M Cuskelly, K Moni & C Leggatt-Cook _
Symposium
Constructing futures: Aspirations and expectations of
young adults, their parents and service providers.
Background: There is dissatisfaction with the nature
of opportunities available to young adults with
intellectual disability once they leave school.
Introduction: Some organisations that provide
services to adults with intellectual disability have
recognised they are failing to meet the aspirations of
young adults and their families. The project reported
in the symposium aimed at providing a deeper
understanding of the hopes for the future held by
young adults with intellectual disability and their
parents. Contribution to the symposium
The symposium comprises three papers: the first
presentation details the results from a series of
interviews about aspirations for the future conducted
with young adults with intellectual disability, their
parent(s) and a person who provided support to
the young adults and/or the family; the second
presentation provides information about the
expectations of staff who work with this group
about the likely futures for adults with intellectual
disability; the third presentation presents some of the
challenges facing organizations who provide services
to adults with intellectual disability and focuses
particularly on how research data may be used to
change services so that they are more responsive to
the needs to the group they serve.
Conclusions: Collecting data from both service users
and service providers should provide information
both about what services are required and about
some of the barriers and facilitators to the provision
of those services that exist within the service provider
organisation. The consideration of these elements
together should result in more effective and more
responsive service provision.
56a.
Enhancing future trajectories for young adults with
intellectual disabilities: Family aspirations and
implications for service provision.
Background: The importance of work in the lives of
adults with intellectual disability is well recognized,
with increasing efforts to assist these individuals to
56
ASID CONFERENCE 2014
transition from school into paid employment. However,
these efforts have not changed the circumstances of many
adults. Thus, there is a need to build effective approaches
to constructing future trajectories that better meet the
aspirations of young adults and their families. The aims
of this project were to develop an understanding of these
aspirations as a first step to enhancing service provision.
Methods: Case studies were developed of 20 families in
urban and regional Queensland, recruited using a range
of approaches. Each family had a young adult aged
between 16-30. The data reported here are drawn from
semi-structured, individual interviews with the young
adult, his/her parent(s) and a significant support person.
Transcripts were analysed inductively using thematic
coding.
Results: Families had varied aspirations for the future
of the young adults although the expectations of the
young adults, parents, and their supporters were not
always aligned. However, independence, friendships and
employment were consistently mentioned. Several key
issues emerged including: barriers to independence, the
influence of location and local community networks, the
role of siblings, and inconsistencies in service provision.
Implications: The implications are that meeting these
aspirations requires a deeper understanding of families’
needs and a broader, more situated approach to service
provision to address the issues raised.
56b.
Perspectives of support staff on the likely futures of adults
with intellectual disability.
Background: Support staff play an important role in
the lives of the individuals with whom they work. Their
behaviours and the opportunities they offer are likely to be
influenced by their beliefs about what is possible for these
individuals; however, little is known about this aspect of
the beliefs of those who support adults with intellectual
disability.
Methods: 179 staff responded to a web-based survey
which included a questionnaire on attitudes towards
those with intellectual disability, and some open ended
questions about the future of one of two individuals with
intellectual disability, briefly described in a vignette.
Initially, participants were asked a general question about
the future of one individual, and this was followed by
more specific questions, including a question about their
perceptions of their role at this future time.
Results: Attitudes were generally positive; however,
Friday 7 November 2014
expectations regarding the future were not very
hopeful. Thirty-five percent believed there would be
no change in the lives of the individuals depicted
in the vignettes; employment did not receive any
consideration from the majority of respondents. The
National Disability Scheme was mentioned by a
very small percentage of respondents. When asked
specifically about their roles, there were a range
of responses, some of which reflected a narrow
view of possible roles, some of which suggested a
much wider view that included contributing to social
change.
Implications: Staff expectations may need to be
challenged if adults with intellectual disability are
to be provided with opportunities and challenges
required for a more included life
56c.
Building research capacity and culture: Strategies
and challenges within a large non-Government
organisation.
Background: The importance of using research to
underpin policy and practice is well established,
yet the disability sector is characterised as lacking
a sufficient evidence base for services that can
meet consumer expectations and support quality
of life outcomes. In response, many NGOs seek
to contribute to or conduct disability research, but
significant challenges can arise around the researchpractice nexus. This presentation describes one
NGO’s effort to support disability research and the
successes and challenges experienced.
Methods: The approach taken comprised
examination of policy and reflection upon practice,
and of the nexus between these aspects of
organizational culture.
3
people to live a life of their choosing, research
evidence can be an essential tool for driving
organisational change. However, the multiple
demands experienced within a dynamic and
constantly shifting policy environment means that the
ability of NGOs to successfully use research for this
purpose requires significant investment.
57.
J Curran, M Kyrkou, K Rye, J Entwistle, C Maher,
M Usman, S Cama & C Mushan - Symposium
Inclusive healthcare in South Australia: Engaging with
complexity
Introduction: The Centre for Disability Health (CDH)
is a health service which is funded and managed
by Disability Services. The CDH provides a range of
services designed to improve the health and wellbeing of people with intellectual or developmental
disability who have health conditions that are not
currently managed adequately (or at all) by the
mainstream health services in South Australia.
Contributions: This symposium will include three
papers. Each paper which illustrate how in practice
the CDH addresses issues of accessibility in the
broadest sense, by describing three services offered
by the CDH
Conclusions: The CDH clinical services are designed
to support mainstream health services to include
people with an intellectual or developmental disability
of all ages by offering more accessible health
consultations, and by providing more expertise in
relation to disability and developmental aspects of the
health condition with the long term goal of engaging
the person with disability in mainstream health care
over time.
Results: Despite a moderately successful growth
in research activity, it has become apparent
that Endeavour Foundation’s internal response
to research evidence is comparatively underdeveloped. Within an organisational context that is
unaccustomed to using research, further strategies
are required to build a culture that values research
and enables space for reflection and change. To
support this, research needs to be practical and
outcomes-focused and findings require careful and
innovative dissemination.
57a.
Implications: As service providers seek to support
Method: Initially the client (aged 8-20 years) and
Reducing the gap with the GAP Program at the
Centre for Disability Health, South Australia.
Background: The Centre for Disability Health (CDH)
was initially developed to support deinstitutionalised
adults with intellectual disability, but as Service
Coordinators in Disability SA became aware of the
benefits to clients, families/carers of attending CDH,
younger clients were being referred in, especially
those with challenging behaviours.
ASID CONFERENCE 2014
57
Abstracts
family/carer were seen by a general practitioner
to exclude medical causes for the challenging
behaviour, especially pain or medication side
effects, but they then had to wait a few weeks for
their psychiatric appointment. To minimise the
waiting time, joint appointments were arranged so
the client could be seen by the GP and psychiatrist
simultaneously. As many of the clients had autism
spectrum disorder with anxiety, and had not coped
well in formal clinical settings, the consulting rooms
were redesigned to reduce anxiety.
Results: Clients first seen by the GP had one or
more planned options including further assessment
or management of a health issue, referral to a
psychologist using a Mental Health Care Plan, referral
to allied health services under the Chronic Diseases
Management Plan, and referral to a psychiatrist for
assessment and management, or medication review.
Some also required the use of the midazolam clinic to
achieve blood taking.
Implications: Parents/ carers of clients unable to be
successfully managed in generic health settings were
supported through CDH for successful outcomes.
Some were later able to successfully re-engage with
their generic service providers. Case studies will be
used to illustrate the GAP Program services.
57b.
Use of intranasal/oral Midazolam for primary health
intervention when faced with challenging behaviours.
Background: Intranasal Midazolam was first trialled
for seizure management in South Australia. First
as seizure management in the school setting and
then utilised within Strathmont Institution. Trials
undertaken prior to prescribing were deemed
successful as pre-procedure sedation. With
deinstitutionalisation and growth of the Centre for
Disability Health clinic, trialling and use of Midazolam
has evolved into a structured and successful program
in offering, otherwise difficult health care access.
Method: The Centre for Disability Health can offer
an appointment to a client registered with Disability
Services, for assessment in prescribing Midazolam.
Consent for a trial is gained at this time. If suitable,
a trial is arranged to assess suitability and dose
for ongoing prescribing. Trial approach and
administration method is planned with those that
know the client best. Trial outcomes are variable in
regard to levels of sedation met. The clinic setting
58
ASID CONFERENCE 2014
and staff approach are equally as important as the
medication.
Results: Disability Services clients from the ages of 8
to 65+ have benefited from Midazolam administration
for venepuncture, dental appointments and
scans undertaken within a radiology department.
Registered Nurses can administer and support
an appointment with a Disability Services client.
Benefits include the short acting sedation offered by
Midazolam and the amnesiac properties that ensure
a return visit to the clinic.
Implications: Greater access to medical interventions
with less fear and challenging behaviour evident.
57c.
Emotional functioning in youth with developmental
disabilities and significant emotional or mental health
difficulties.
Background: Intellectual disability is a major
risk factor for developing psychopathology and
mental illness. Dual disability (mental illness
and developmental disability co-occurring) is a
challenging area in which to work for mental health
professionals. This paper describes an assessment
of the functional emotional capacities of a person
with an intellectual disability in the context of mental
health assessment. Appreciation of client’s functional
emotional capacities enables targeted functional and
developmentally informed interventions.
Method: The Schema for the Appraisal of Emotional
Development (SAED) is described, including a case
study which illustrates the use of the SAED to guide a
mental health intervention.
Results: The case study indicates that emotional
development is a relevant aspect of assessment of
dual disability, and that a better understanding of the
specific profile of emotional development can provide
new ways to approach interventions
Implications: In the intellectual and developmental
disability fields, emotional development has been
a relatively neglected area when assessing a
person’s developmental competencies. However an
understanding a person’s emotional developmental
profile has helped people with intellectual disability
with emotional and behavioural difficulties, their
families, clinicians, therapists, support workers and
educators to generate developmentally appropriate
interventions.
Friday 7 November 2014
58.
S Boulter
Legal advocacy for people with an intellectual
disability
Background: Every participant in our Boards,
Tribunals and Courts must understand and be
required to address, the particular needs facing
people with an intellectual disability who appear
before them. People with an intellectual disability can
also experience mental illness, which exacerbates
the need for this understanding. People experiencing
the signs and symptoms of this comorbidity often find
themselves caught up in the criminal justice or civil
detention systems, where breaches of their human
rights may occur.
Methods: In Western Australia, we have a particularly
iniquitous “mentally impaired accused person”
legislative regime, which can lead to great and
unnecessary hardship. Furthermore, advocacy
through specialist legal advice and representation
is fraught with the lawyer’s professional dilemma of
the requirement to be instructed by someone with
capacity to instruct a lawyer, as required by the Legal
Profession Conduct Rules 2010 (WA), but helping a
client who is in need of specialist legal advice and
representation, whose legal standing is undoubted
but whose legal agency is doubtful, if not absent.
Results: This paper will explore legislation that
causes unfair and unreasonable hardship to people
living with an intellectual disability and experiencing
the signs and symptoms of a serious mental
illness, in WA in particular. The paper will explore
the responses to disability by us, as a community,
through our parliamentary representatives’ legislative
program, and the particular impediments that this
produces for people with an intellectual disability.
Implications: The paper will close with some
proposals for and implementation of national law
reform.
59.
M Mansour
Declared Places: declaring and meeting the needs of
the accused with intellectual or cognitive disability
Background: People with intellectual or cognitive
disability who are found unfit to plead to criminal
3
charges are often detained in mainstream prisons.
This is an ongoing social justice issue.
Method: Custodial services never established the
“declared place(s)” for the accused, as permitted
by the Criminal Law Mentally Impaired Act 1996.
The Disability Services Commission (Commission) is
the government agency experienced in meeting the
needs of people with disability in Western Australia.
The Declared Places (Mentally Impaired Accused)
Bill 2014 (Bill) is a milestone. The Bill gives the
Commission the legislative framework and authority
to operate a declared place, control behaviour
of the accused, maintain his or her welfare and
secure environment and provide the accused with
individualised services.
Results: The Commission, via the Bill and an “all
aboard” approach, is establishing the declared place
(disability justice centre(s)). The development of
declared place(s) is a current project, and this place
is (or these places are) yet to operate.
Implications: This paper will examine the implications
of the Bill, and how, for example, by giving the
accused a secure environment and the skills and
training to be future responsible citizens, community
safety will be ensured and protected, the needs of
the accused will be met and the vulnerabilities of the
accused in the justice system will be significantly
decreased. Therefore, this paper will emphasise
how principles and operative effect of the Bill will
contribute to an “all aboard, inclusive society”.
60.
D Fagan
Justice for Autism: a targeted training approach for
the criminal justice sector
Background: Current data both from the UK and
USA informs us that there are many people in the
criminal justice system with a range of complex
cognitive impairments including Autism Spectrum
Disorder (ASD) who are presenting behaviours of
concern across the sector. Evidence suggests that
the criminal justice sector would benefit from targeted
Autism-specific support to assist them in dealing with
the unique interactions they have with this group.
We propose that training should be provided to those
within the criminal justice sector to assist them to
work more effectively with the specific criminogenic
needs of people who identify with ASD. These
ASID CONFERENCE 2014
59
Abstracts
include dynamic risk factors such as:
• Lack of effective communication skills
• Complex comorbidities such as mental health,
ADHD or alcohol & drug issues
• Misperceptions of societal social norms
• Sensory overload in public spaces
• Rigidity around routines & expectations
Method: The Justice for Autism initiative proposes
to firstly address the limited understanding and
training that is available to people within the criminal
justice sector about the complex characteristics
associated with people on the Autism spectrum.
We believe effective training would provide the
essential knowledge that can be put into immediate
practice when dealing with an offender or a victim
on the spectrum, or in supporting family carers with
behaviours of concern which present.
The training would include:
• Overview of Autism and its characteristics –
debunking myths
• Indicators that an individual may have traits of
Autism – what do we see?
• Complex comorbidities – mental health / ADHD /
AOD
• Appropriate referral pathways and available
resources for this group
• Successful international practice models within
justice settings
• Behaviours of concern – possible triggers
• Minimising sensory impact and de-escalation
strategies
• Appropriate communication strategies and aides
Results: The results will evidence:
• Performance indicators for staff awareness
within the justice system around Autism-specific
concerns.
• Qualitative and quantitative data collection to
inform practice improvement.
Implications: It is anticipated that improved outcomes
will be experienced by those working in the justice
sector and those with ASD needing to negotiate the
criminal justice system. It is also anticipated that
more effective communication can be realised for
victims or carers linked to offenders with ASD.
It is also expected that the data collected will provide
a body of knowledge to inform future practices
and policies which seek to address the complex
behaviours that are associated with ASD and the
criminal justice sector.
60
ASID CONFERENCE 2014
61.
S Thoresen, E Cocks & R Parsons
Employment and related economic outcomes for
apprenticeship and traineeship graduates with
disability: findings from a three year longitudinal study
Background: Australian and international research
consistently document poor employment and related
economic outcomes for people with disabilities.
Contributing factors may include low vocational
expectations, discrimination and inaccurate
perceptions of work capacities in the workplace,
inadequate employment supports, as well as
challenges related to social security eligibility criteria
and benefits. Apprenticeships and traineeships are
useful vocational pathways for people with disabilities
as they include work-based training which has been
identified as leading to positive vocational outcomes.
Method: Three annual mail surveys (2011-2013) of
an initial cohort of 489 graduates with (403) and
without (86) disabilities mapped social and economic
outcomes. Intellectual or learning disability was the
most prominent disability classification, comprising
40% of first wave respondents in the disability group.
A total of 350 (72%) participants completed all three
surveys.
Results: The study documented good employment
and related economic outcomes for graduates
with and without disabilities. Data analysis from the
first wave suggested that employment outcomes
(employed, hours of work, and wages) were
statistically significantly better for graduates without
disabilities. However, for graduates in full-time
employment, there were no statistically significant
differences in hours of work or wages between
graduates with and without disabilities. Second
wave analysis of economic and related outcomes
suggested a narrowing of employment and related
outcomes as there were fewer variables with
statistically significant differences between graduates
with and without disabilities. Analysis of third wave
outcomes is currently underway.
Implications: The study suggests that completing
apprenticeships and traineeships provides good
employment and related economic outcomes. There
are indicates that over time, outcomes for graduates
with and without disabilities narrows (fewer variables
with statistically significant differences).
Friday 7 November 2014
62.
C Bigby, M Knox, J Beadle-Brown & E Bould
Identifying good group homes for people with severe
intellectual disability using a Quality of Life framework
Background: Despite change towards more
individualized support, group homes are likely to
remain for people with severe intellectual disabilities.
As such, the search continues for ways to determine
and maintain the quality of these settings.
Method: This paper draws on in-depth qualitative
analysis of participant observations conducted over 9
– 12 months in seven group homes for 21 people with
severe and profound intellectual disability. Four of the
homes had been nominated as ‘the best of their kind’
by provider organisations or the community visitor
program. The paper explores the conceptualization
of good outcomes and support for this group of
residents in terms of their quality of life and staff
practices.
Results: A set of qualitative indicators of good
outcomes and practice in respect of people with
severe and profound intellectual disability was
developed from the data based on quality of life
domains. Homes were rated against the indictors
on the basis of consistent performance over time
and for all residents in each home. Finding; The
ratings indicated differences in resident outcomes
and staff practices between the seven homes and
showed that the four homes nominated by others
as the beset of their kind were not uniformly good.
None of the homes performed strongly on the
domains of personal development and interpersonal
relationships.
Implications: External judgements without some form
of systematic approach about quality of group homes
are not necessarily reliable. The set of indicators have
been adapted as a guide to community visitors of
what to look for in good group homes and support a
greater during their visits on practice. The indicators
could also be used by auditors, community visitors,
funders, advocates or family members to guide
observation and judgements about group homes.
63.
C Bigby, E Bould & J Beadle-Brown
Quality of life for people with intellectual disability in
group homes: What makes a difference?
3
Background: Outcomes are variable in small group
homes and dependent on the practices of staff.
Person centred active has been shown to lead to
better outcomes. Active support has been adopted
by disability support organisations in Australia but
has proved difficult to implement consistently over
time. This study investigated the outcomes for
residents of small group homes and staff practice
of active support and whether these change over
time, as well as the organisational structures and
processes associated with high levels of active
support.
Method: Early findings from a longitudinal study of 9
organisations in 3 Australian states are presented.
Date are reported on outcomes for 189 people
with intellectual disability living in 58 group homes.
An audit of resident characteristics, structured
observations, surveys, and interviews with staff were
used to collect data about staff practices, the level of
active support, organisational structures and process,
such as practice leadership, and resident outcomes
such as the engagement.
Results: Levels of active support was generally low
but with an upward trajectory in the organisations for
which this was the third year of participation. Higher
levels of engagement were associated with higher
levels of active support which in turn were associated
with good practice leadership.
Implications: These findings point to the importance
of front line practice leadership to support staff
practice, and the effect of a concerted organisational
focus on staff practices. They also demonstrate the
importance of observation as a method of monitoring
practice within organisations and measuring
outcomes.
64.
C Bigby
Perspectives on ‘Supported Living’ from people with
intellectual disability
Background: Dissatisfaction with the inflexibility
of group home models has led to the growth of
‘supported living’ which separates housing from
support. This paper reports findings from the first
phase of a study to develop knowledge about the
configuration of support arrangements and social
contexts that optimise the success of supported living
arrangements and good quality of life for people with
intellectual disability.
ASID CONFERENCE 2014
61
Abstracts
Method: Six focus groups were conducted with 41
people with intellectual disability who lived in various
types of supported living arrangements. Participants
discussed their views about living independently,
their support arrangements, what worked well and not
so well for them. The conversations were recorded
and transcribe verbatim and analysed thematically.
Results: All participants preferred living
independently; its primary advantage was the
‘freedom to do your own thing’. All had informal
social connections and used local community
facilities. Tenancy and support arrangement varied,
and support was split between different providers,
but everyone felt help was available when needed.
Contrary to previous studies a participants had
regular structured engagement in purposeful
activities. Their level of income and control over
finances, safety, and poor access to technology
created problems for some participants.
Implications: These data provide insights into
the perceived advantages of community living,
the potential for it to work well and some of the
challenges of providing an underpinning network of
support.
65.
R Hussain, T Parmenter, M Knox, M Parmenter,
S Wark & M Cannon-Vanry
Ageing-in-Place: perceptions of people with
intellectual disability and those without lifelong
disability in rural and metropolitan NSW
Background: There is a substantial increase in the
number of people with intellectual disabilities (PwID)
who are ageing. However, there is very limited
information on commonalities and differences in
the ageing experience of PwID and those without a
lifelong disability.
Method: Semi-structured in-depth qualitative
interviews were conducted with PwID who are ageing
as well as those ageing without a lifelong disability
and their designated carers in rural and metropolitan
NSW. The sample (n=40) included people who
were living in their local community (family or group
homes) and also those who had moved into a
residential aged care facility. Thematic analysis was
undertaken to determine major themes embedded in
the qualitative data.
Results: Some of the key themes across both groups
62
ASID CONFERENCE 2014
include the importance of choice and involvement
in decision-making about accommodation
arrangements, a strong desire for maintaining social
connections, continuing to be actively involved in
contributing to society (having a role, purpose and
meaning). Some of the challenges across both
groups included managing continuity of social
networks, difficulties in accessing services and for
rural residents, limited availability of accommodation
options and health services.
Implications: The presentation will focus on strategies
for improving inter-sectorial collaboration across
disability and aged care services especially in
resource limited rural environments. The implications
of the study findings with regard to national reforms
in disability and aged care sector will also be
discussed.
66.
J Goodwin, P Strutt, T Dudding-Byth & L Campbell
Psychological growth in parents of children with
genetic neurodevelopmental conditions: preliminary
results.
Background: When a child has a developmental
disability the entire family unit is affected. However,
parents can improve and even thrive as a result of
their child, often constructing meaningful stories
surrounding their journey, or discovering new
happiness. This is psychological growth. There is
limited research determining the factors that promote
growth or resilience in families with a child affected
by developmental disorder.
Method: We aim to examine psychological growth
(and the factors affecting it) in parents of children
affected by neurodevelopmental conditions including
22q11.2 deletion syndrome, Down syndrome, and
multiple congenital anomalies which have not yet
been diagnosed. The current sample comprises 189
parents and caregivers.
Results: Initial analyses indicate that parents
generally perceive positive change as a result of
their child, with high scores across participants
on psychological growth. Those who were more
accepting of their child’s diagnosis showed greater
growth than those who were less accepting.
However, the child’s condition type, parental
education level, and country of residence did not
affect growth in this sample.
Friday 7 November 2014
Implications: An explanation of the results in
light of the preliminary nature of this study will be
provided. Strong and supportive family functioning
is particularly important to examine in families of
children with neurogenetic conditions, as they
are at increased risk for adverse developmental
outcomes. A supportive family environment can act
as a protective factor when faced with significant
challenges and increase resilience.
67.
E Walker, F Crawford & H Leonard
Seeking belonging: how parents of daughters with
Rett syndrome facilitate friendship and community
involvement.
Background: Having friends is beneficial to our health
and wellbeing. People who have profound intellectual
and multiple disabilities are reported to have few
friends, and to face significant challenges to being
involved in their community. The aim of this study
was to deepen understanding of how young women
with Rett syndrome and their families address these
challenges.
Methods: The qualitative study was informed by the
theory of social construction of reality. Face to face
interviews were conducted with the families of six
young women registered with the population-based
Australian Rett Syndrome Database. Transcripts of
the interviews were explored for narratives associated
with friendship and social participation.
Results: Parents said they would like their daughters
to have friends and a sense of belonging in their
community. They described their daughters as
lacking capacity to take part in activities that might
allow friendships to develop. They were concerned
that complex communication needs posed a major
risk to the safety of their daughters in the community.
Parents reported and valued friendly interactions
between their daughters and people in the
community.
Implications: Parents of young adults with severe
intellectual disability should be supported to explore
what it would take for their young people to have
friends. Parents need help to support their young
person to have opportunities to meet people in their
community, interact with them, and to keep them safe
in risky social situations.
3
68.
J Man, M Kangas, J Trollor & N Sweller
Current clinical attitudes and practices of
psychologists working with adults with dual
disabilities: a National survey.
Background: The contribution of psychologists in
mental health provision of people with intellectual
disabilities (PWID) has been largely neglected. The
aim of the study was to investigate current clinical
assessment practices of psychologists in Australia
who provide services to adults with intellectual
disability and co-morbid mental health concerns.
Method: Psychologists who work with adults with
intellectual disabilities completed an online survey
on clinical attitudes and practices. A total of 109
participants consisting of provisional, generalist and
clinical psychologists from a variety of work settings
were recruited nationally.
Results: Almost half (49%, n=109) of psychologists
surveyed considered themselves as specialists in
mental health and intellectual disability. Amongst
61 psychologists who conduct mental health
assessments 24% considered mental disorder
diagnosis to be the role of generalist psychologists;
8.2% considered this the role of clinical psychologists
while 39% considered this the role of psychiatrists.
Psychologists reported collaborating with other
professionals for mental health assessment for
PWID, with psychiatrists reported as the mostly
likely profession for collaboration. Applying special
considerations and modifying mainstream clinical
practice to suit clients with an intellectual disability
was reported to be common practice. The majority
(86%, n=105) of participants reported needing further
training in mental health and intellectual disability.
Implications: The findings from this national
survey suggest that psychologists often engage
in interdisciplinary collaboration and apply
modifications to mainstream practice when working
with PWID. Although half perceive themselves as
specialists in mental health and intellectual disability,
further training is required to improve mental health
assessment and diagnosis in PWID.
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63
Abstracts
69.
J Fairthorne, G Hammond, N De Klerk
& H Leonard
Exploring the risk factors for disability using linked
health data
Background: Retrospective, linked population-based
health data enables the exploration of pre-existing
characteristics and exposures of people who later
parent a child with a disability. In this way, risk
factors for the event might be identified and future
research implicated.
Method: We illustrate this technique using our study
of pre-existing psychiatric disorders in the mothers
of children with intellectual disability (ID) and autism
spectrum disorder (autism). We aimed to assess the
relationship between women’s outpatient psychiatric
contacts and subsequent offspring with ID, autism or
both. We linked three Western Australian populationbased registers. The relationship between maternal
psychiatric contacts before the birth and the odds
of ID and/or autism in a subsequent child were
investigated using multinomial logistic regression.
Results: Women with pre-existing psychiatric contacts
were more than twice as likely to have a child with ID
or autism. Hence, our use of linked data enabled us
to conclude that the rate of pre-existing psychiatric
disorders is higher in mothers who have subsequent
children with ID or autism.
Implications: Research exploring the effect on
pregnancy outcomes of medications prescribed to
women with psychiatric disorders and the common
genetics of psychiatric disorders, ID and autism is
implicated.
70.
D Casey
Who will make decisions for your child when they turn
18?
For parents of a child or young adult with a decisionmaking disability, planning for the future raises many
questions. Making decisions about their child’s future
care and support often leads parents to consider how
decisions will be made for their child if they are no
longer able to make them on behalf of their child.
In planning for their child, parents may also start to
consider their own future and who will support and
make decisions for them if they ever lose capacity –
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ASID CONFERENCE 2014
due to illness or an accident. Alternatively it may be
that in focussing on their child, the parents never give
consideration to planning for their own future. Many
people think their spouse or children may take on
this role, but what happens when those people also
lack capacity and there is no one available to make
decisions?
The Guardianship and Administration Act 1990
provides options in both situations. It provides a
process for the State Administrative Tribunal to
appoint a substitute decision-maker, when a person
has lost capacity. The Act also gives adults with
full decision-making capacity, the ability to decide
who will make decisions for them if they ever lose
capacity, which they can do by making an enduring
power of guardianship and/or enduring power of
attorney.
This paper will identify: (1)what ‘guardianship’ and
‘administration’ are, and how people can have a
substitute decision maker appointed; (2)the main
agencies involved in guardianship and administration
and details on where to get further information; (3)
the different options when planning for the future,
to enable parents to consider whether applications
for guardianship and administration orders might be
necessary, or if there are informal processes which
will work in the best interests of their child after they
turn 18; (4)considerations for parents in thinking
about their own future decision-making.
71.
A Jobling
Enhancing post-school literacy education programs
for young adults with intellectual disabilities.
Background: Post-school literacy education programs
that are specifically designed for young adults
with intellectual disabilities are under researched.
Such research has mainly comprised single case
studies, clinical interventions, or program analyses.
The impact of these studies is limited by the focus
on literacy instruction as intensive or short-term
interventions disconnected from community contexts,
and a lack of information about meaningful learning
outcomes. In the context of the NDIS, there are
increasing calls to enhance educational opportunities
available to young adults. However, we need more
evidence about how learning can be sustained
in these programs that moves beyond access
and intervention to consider meaningful learning
outcomes.
Friday 7 November 2014
This presentation reports the learning outcomes
gained by participants in a longitudinal research
project investigating one such post-school literacy
program.
Methods: Since 1998, data related to receptive
language, vocabulary, and reading comprehension
were collected from 165 participants on enrolment
(Time 1) and graduation (Time 2) using the Peabody
Picture Vocabulary Test - Form IIIA (PPVT), the Burt
Word Reading Test - New Zealand Revision, and the
Neale Analysis of Reading Ability – 3rd ed,.
Results: The quantitative analysis of the data revealed
significant differences in receptive language,
vocabulary, and reading comprehension across the
two data collection points.
Implications: Young adults participating in one
specifically tailored post-school educational
program to develop literacy, continued to improve
their receptive language, vocabulary, and reading
comprehension. The implications of this are that
post-school educational programs need explicit
measureable learning goals that can provide
evidence of students’ learning.
72.
S Waller & J Verjans
As We Are: a West Australian community initiative
bringing joy and wellbeing to the lives of artists who
have an intellectual disability
Inspired by the creative expression of artists who
have an intellectual disability and a belief in equal
opportunities, As We Are was initiated in 2002 as
a one-off Art Award and Exhibition and has grown
to become a prestigious and significant event on
the WA arts calendar. Managed by the Nulsen
Association and supported by Mosaic Community
Care, As We Are, in response to overwhelming
support, has continued and expanded to include
a number of initiatives aimed at recognising and
valuing the creative expression of WA artists who
have an intellectual disability and their contribution to
the Western Australian arts and broader community;
projects including a Disability and the Arts Network,
annual Disability and the Arts Forum, a quarterly
newsletter, children art workshops, and most recently
an art competition to design the logo of the 2014
ASID Conference!
A number of outcomes have resulted from As We
Are and its many initiatives. In respect to artists who
3
have an intellectual disability, key outcomes include:
artists’ earning an income from their art practice;
developing/strengthening the artists’ professional art
practice including skills development; developing/
strengthening the artistic knowledge and skills of the
supporters of the artists; increased recognition and
value of artists who have an intellectual disability
by the WA arts and broader community; and a
more inclusive Western Australian arts community.
Anecdotal evidence supports these claims as well as
As We Are’s contribution to the joy and wellbeing of
participating artists as well as those who are part of
the experience.
Coordinator Susie Waller will be joined by Artist John
Verjans who will share his experience of being part
of As We Are and how his involvement has impacted
upon his arts practice and life more broadly.
73.
C Fyffe, L Raskin & D Leighton
Steps towards friendships – implementing a leisure
buddy program
Background: Many people with intellectual disability
are isolated and lonely. This paper describes the
program design and outcomes from one approach
to matching a community volunteer with a person
with intellectual disability to spend time together on a
regular basis in various community settings.
Method: Interviews were conducted with the program
coordinator; program documents, case studies and
program statements were reviewed; and program
data reports were analysed.
Results: There were nineteen instances of successful
matches between a community volunteer and a
person with a disability, called the leisure buddy.
Issues identified in running the program were
the importance of, ongoing recruitment efforts to
attract potential community volunteers and leisure
buddies; the community volunteer and leisure buddy
living nearby; and the importance of the program
coordinator’s role in successful matching and follow
up in the first 3-6 months after matching.
Acknowledgements: This work was funded as part
of an evaluation for Inclusion Melbourne, Victoria.
Case studies have been de-identified and with details
combined in order to summarise but not identify
particular people’s situations
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65
Notes
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ASID CONFERENCE 2014
Poster Presentations
ASID CONFERENCE 2014
67
Poster Presentations
P1.
A Urbanowicz, J Downs, N Ciccone, S Girdler
& H Leonard
Contextual factors influence the success of
communication between girls and women with Rett
syndrome and their communication partners.
Background Rett syndrome is a neurodevelopmental
disorder associated with mutations in the X-linked
methyl-CpG-binding protein 2 gene. The syndrome
is a leading cause of intellectual disability in females
and those affected experience numerous, and often
severe, physical and language impairments that
negatively impact on their ability to communicate.
Parent report information suggests contextual
factors relating to the communication partner and
the environment may influence the success of
communicative interactions however few studies have
empirically investigated these factors. We conducted
a study using video recorded data to investigate
the influence of the communication partner and
environment has on the communicative success of
girls and women with Rett syndrome.
Method Data for this study was obtained from the
Australian Rett Syndrome Database, a populationbased database collecting information on girls and
women with Rett syndrome born since 1976 using
a variety of methods. Using videos provided by
families, of girls and women with Rett syndrome
engaged in everyday activities, we described the
communicative interaction between the girl or
woman and their communication partner. We coded
communicative forms and functions, and measured
communication partner factors such as the length of
time spent waiting for a response and environmental
factors including the context of the activity.
Results and implications The results of this study will
present the influence of the communication partner
and other environmental factors on the success
of communicative interactions. The implications of
modifying these factors to enhance communicative
interactions, between girls and women with Rett
syndrome and others, will also be presented.
P2.
K-M Gilson, E Davis, E Waters & L Corr
Enhancing the mental health of parents of children
with a severe disability
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ASID CONFERENCE 2014
Background: Higher rates of chronic stress,
poor physical health, depression and anxiety are
commonly reported for mothers of children with a
disability. These findings are reported both within
Australia and at the international level. Poor mental
health can strongly affect parents’ capacity to provide
quality care to their child and respond to their child’s
developmental needs. There are very few practical
resources available to parents that encourage them
to look after their mental health and provide advice
on self-care. This study aimed to work in partnership
with parents and health professionals to develop
and test the acceptability of a practical resource that
enhances awareness about parents’ mental health.
Method: An exploratory qualitative approach using
semi-structured telephone interviews was taken.
Twenty parents who cared for a child or young
person (aged 2-18 years) with a severe disability
participated in an initial interview. Thematic analysis
was used to code emergent themes and identify key
areas of content for the resource.
Results: All parents voiced the need for a resource
that is specifically targeted towards their wellbeing.
Parents recommended that the following was
included: 1) Strategies for looking after yourself
2)
Ways to improve social support
3) Opportunities for
action/self-reflection
4) Activities and strategies to
promote wellbeing
5) Awareness of what can affect
a person’s wellbeing 6) Barriers to wellbeing
7)
Complexity of respite
and 8) Importance of
counselling. The acceptability testing showed that
carers were satisfied with the resource and this
has been in wide demand by parents and disability
services.
Implications: The findings highlighted the need for
more mental health research in parents of children
with a disability and the value of producing costeffective resources that can be accessed by parents
within health and disability services.
P3.
J Downs, K Wong, M Ravikumara & H Leonard
Feeding methods, growth and gastrostomy in girls
and women with Rett syndrome
Background: Rett syndrome is a severe
neurodevelopmental disorder caused by a mutation
on the MECP2 gene. We investigated feeding
difficulties and outcomes following gastrostomy in
Rett syndrome.
P
Method: The Australian Rett Syndrome Database
contains data on 411 females with Rett syndrome
born since 1976, 103 (25.1%) with a gastrostomy. We
analysed feeding and gastrostomy satisfaction data
from 2011 family questionnaire data, supplemented
with weight data from family and clinical records.
For those feeding orally, we analysed relationships
between feeding difficulties, age and genotype. For
those with a gastrostomy, we analysed weight gain
and family satisfaction.
Results: If feeding orally (n=167/223), girls younger
than 7 years had longer than average meal-times
(OR 2.69, 95% CI 0.91,7.98) and families were
more concerned about food intake (OR 4.40, 95%
CI 0.96,20.07) compared with their adult peers.
Those with a large deletion were often perceived as
eating poorly with close to 8 fold (OR 7.76, 95% CI
1.64,36.86) increased odds of coughing during meals
compared to those with the p.Arg133Cys mutation.
Sixty-six girls and women had a gastrostomy and
in those who were fed enterally (n=50/223), large
deletion, p.Arg106Trp and p.Arg270* mutation
were commonly observed. Weight-for-age z-score
increased by 0.77 (95% CI 0.27,1.27) over 2
years after surgery. Families were satisfied with
gastrostomy procedures feeling less anxious in
subsequent caring for their child.
Implications: Parents of girls who were younger
or with a large deletion mutation more frequently
reported feeding difficulties. Gastrostomy can
successfully ease the management of feeding
difficulties and poor weight gain.
P4.
A Thomson, E Glasson, P Roberts & A Bittles
‘…a weapon against the stress…’: coping with the
role of family carer
Background: Many parents of people with Angelman
syndrome (AS) and Prader-Willi syndrome (PWS) in
Western Australia will act as carers for their offspring
for considerable periods of time. We investigated
the stresses associated with the caring role, and the
adoption by parents of specific coping methods.
Method: Parental carers of people with AS and
PWS participated in the Family Stress and Coping
Interview, a semi-structured interview which provides
a stress level score, and allows discussion of
stressors and coping methods associated with 24 life
situations.
Results: Family carers (13/18) reported particularly
high stress associated with two life situations: the
initial diagnosis of AS or PWS in their offspring;
and finding time for themselves. Parents identified
numerous factors as stressors, including lack
of quality information about the disorder, time
constraints, and physical and emotional tiredness.
Most parents adopted a variety of coping strategies,
including improving their knowledge of the condition,
accepting the situation, and putting effort into dealing
with problems.
Implications: There was no association between
any specific coping strategy and reduced stress.
However, parents felt that accurate and timely
information during the diagnostic period would be
beneficial. Parents with ample family and community
support were more likely to find sufficient personal
time than carers with few such supports in place.
Government agencies, service providers, family
members, and peer support organisations should be
aware of the need for practical and emotional support
to assist parental carers of people with AS and PWS,
and indeed any intellectual disability, across the
lifespan.
P5.
H Johnson, B Solarsh & D West
Communication Access: A pathway to community
inclusion
Background: Communication problems of people with
intellectual and developmental disability limit their
ability to be social included. In Victoria, Australia,
over 50 businesses and services across government,
non-government, retail and leisure sectors have
registered to break down these barriers and become
communication accessible. We describe the journey
towards accessibility and the critical features of the
process.
Method: The Communication Access Checklist is
administered by trained communication access
assessors who have communication difficulties.
This checklist assesses attitudes and skills of staff
when interacting with people with communication
difficulties, and how aspects of the environment
assist communication. A communication access
assessment involves a preparation phase, when
businesses and services are guided to improve their
communication access; a face to face communication
access assessment and a phone assessment. If the
ASID CONFERENCE 2014
69
Poster Presentations
business /service meet the minimum standards, they
are awarded the communication access symbol.
Results: Currently all of the organisations
eventually achieved communication access. Some
organisations were slow to adapt signage. Successful
organisation reported how the staff had developed
greater awareness about communication difficulties
and learnt how to communicate more effectively after
receiving training.
Implications: An essential part of becoming
communication accessible relies on the training
component delivered by people with communication
difficulties.
P6.
J Fairthorne, C Fisher, J Bourke & H Leonard
Mothers of children with intellectual disability and
comorbid autism spectrum disorder and the impact
of the disability on their health and relationships: a
qualitative study
Background: Mothers of children with intellectual
disability and mothers of children with autism
spectrum disorder (autism) have a lower quality of life
than other mothers. Since the 1980s, the prevalence
of autism has increased and many institutions caring
for people with developmental disabilities have been
closed. Hence, more mothers are now caring for their
children with intellectual disability and autism. We
aimed to identify factors affecting the quality of life
of mothers of children with both intellectual disability
and autism. This has not been done before and is
important since factors impacting on this group of
mothers are likely to be different from those affecting
the first two groups.
Method: The first author interviewed 16 mothers
of 11-24 year olds with both intellectual disability
and autism and transcribed audio recordings
of the interviews. The first two authors then
analysed the resulting texts using a hermeneutical
phenomenological approach.
Results: Mothers perceived strong negative impacts
on their quality of life through the effects of their
child’s disability on their health and relationships.
A majority of mothers suggested interventions to
improve the quality of life of other mothers caring for
children with intellectual disability and autism.
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ASID CONFERENCE 2014
Implications: These data might be used to inform
services and interventions aimed to improve the
quality of life of affected families and thereby reduce
the economic burden to the community.
P7.
G Andrews
A systematic review of the ‘lived experiences’ of
persons with intellectual disabilities who have lived
their life in residential state care facilities.
Background: This presentation showcases the ‘lived
experiences’ of persons with an intellectual disability
who have lived in residential state care in the western
world from 1950’s - 2012. Until recently, the first
person ‘lived experience’ accounts of this cohort have
been neglected, in favour of accounts of persons with
physical or sensory impairments who live in the wider
community.
Method: This study redresses the balance, through a
systematic review of available literature on the lived
experiences of this cohort. A literature review of key
international (English publications) and Australasian
published peer reviewed first person accounts
of the lived experience of being intellectually
disabled and living in state care is undertaken.
Case studies illustrate key findings, particularly the
works of Traustadottir & Johnson (2000), Mitchell
and Traustadottir (2006), Johnson and Traustadottir
(2005), Manning (2009), and Mirfin-Veitch (2005).
A personal unpublished case study from the
researcher’s lived experience as a carer of an
intellectually disabled family member from this cohort
will serve as the anchor to illustrate findings.
Results: This study confirms the comparative lack
of first person and reconstructed accounts for this
cohort, and the reality of being intellectually disabled
and living in state care. It is argued that collation of
first person accounts is key to understanding the
impact of institutionalisation, deinstitutionalisation
and the human costs and associated experiences of
individuals and families who have family members
living in state care.
Implications: The process of living in state care has
left an indelible impact on the clients and families
involved. It is argued that the development of firsthand accounts is crucial to understanding the
lessons from the impact of government administrative
P
decisions and policies. Recording of first person
accounts is also key to honouring the importance
of the individual’s experience and the irreversible
impact that living in state care has had on their lives
and that of their families.
P8.
N Crates & J Prodan
From Conference to Practice- A Community
Inclusion Project Inspired by Angela Novak Amado’s
Presentation at ASID 2013
Background: “With the closure of institutions in the
1970’s and 1980’s a movement began to transition
people back into the community. As the deinstitutionalisation started, many noted that although
people with disabilities were now in the community,
they were not of the community. That is although
individuals with disabilities may have been physically
living in the community they had little sense of
belonging to community life” Angela Novak Amado
2013.
Optia’s clients agree, they rated being involved in
their community and creating friendships as of the
highest importance to them in a feedback survey held
in 2013.
Method: By using Angela Novak Amado’s manual
Friends, Connecting People with Disabilities and
Community Members and worksheets a pilot project
has been conducted within Optia involving 5 five
clients and their support workers. Angela’s manual is
a compilation of more than 20 years of learning from
support staff and from people who receive services
and from community members that have befriended
people.
Worksheets were used to help identify individual
desires and aspirations and to define strategies to
support people to connect with their community.
Results: The perspectives of staff and clients will
be presented in images and words, in terms of
their experiences participating in the program and
the personal outcomes that have resulted from the
project.
Implications: Community inclusion and the
development of real friendships and relationships
is a key aspiration identified by clients of Optia and
more broadly for people with disability. This poster
will demonstrate the challenges and possibilities that
come from translating a conference presentation into
practice.
P9.
K Boxall
Different ways of knowing - the knowledges of
people with intellectual disabilities and academic
researchers
Background: In November 2009, I was lucky enough
fly from the UK to the ASSID Conference in Hobart,
Tasmania. It was a fantastic conference with many
presentations which interested me greatly but it
was almost as if there were two separate ‘streams’:
one for people with intellectual disabilities and their
supporters; the other for academic researchers.
Both were however inspirational and my aim in this
presentation is to raise the question, ‘What is the
relative status of the knowledges presented in each
of the two ‘streams’?
Method: To do this, I draw on the work of Feminist
philosophers Sandra Harding and Miranda Fricker
who discuss knowledge from the perspectives of
non-dominant groups and the epistemic (knowledgerelated) injustice which can occur when people
are wronged in their capacity as knowers of valid
knowledges.
Results: Academic knowledge is important but
there are also other ways of knowing; these ways of
knowing are important too.
Implications: It is important to take seriously the
knowledges and perspectives of people with
intellectual disabilities at conferences, and elsewhere.
P10.
T. Stott & J Tan
Strengths for Life Profile; Enabling Families to Set
Meaningful, Functional and Participation Based Goals
Background: In order to ensure the key concepts
of our practice were central to all our dealings with
families we developed a visual tool which ensures
client-centred, trans-disciplinary, and strengths
based practice. This visual tool enables clients and
families to self-direct goal setting by supporting a
ASID CONFERENCE 2014
71
P
Poster Presentations
rich conversation allowing them to articulate what
is important and meaningful. The profiling tool
uses a visually accessible format that focuses on
everyday routines and activities. Pictures support
the application of skills and abilities across contexts
including home, education and the community.
The profile also facilitates conversations regarding
how foundational skills can build to develop more
complex abilities. This enables clients and families to
establish functional and specific SMART goals. The
tool harnesses clients’ strengths and interests into
their goals, supporting and motivating them to work
on their challenges.
Method: The Strengths for Life Profile was used
across Therapy Focus as an adjunct to our current
initial consultation meetings and review of service
meetings held with clients and their families.
Qualitative results indicated a positive trend in the
families’ satisfaction with the goal-setting process
with many families and therapists reporting more
positive engagement in all concerned. Workshop
training was targeted to ensure uniformity of use
of the tool. Follow-up questionnaires were used
to gather feedback from therapists and families
involved.
Results: The ability to set trans-disciplinary goals
was enhanced while holistic goal setting considering
all environments was made much simpler and more
achievable.
Implications:
• Empowering clients and their families
• Promoting trans-disciplinary practice
• -SMART, meaningful and participation based goals
are established
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ASID CONFERENCE 2014
P11.
S Urrutia, F Coluccio, and the team at Infinity
Technologies
‘Advocacy Voice’ – A new avenue for Advocacy
Background: In the changing world of Disability, it
is recognised by Uniting Care NSW.ACT that the
services we currently provide, especially advocacy,
will need to evolve over the next four years. The
policy shift from the NDIS will empower people
with a disability and their families to take control of
their lives, with an emphasis on choice and control.
Choice and control have never before been as
important therefore it is an identified need that people
with disability and their families will require greater
support, tools and education around these issues.
Advocacy has often been achieved through a service
provider but under NDIS, this much needed service
model is at risk of disappearing.
Method: UnitingCare NSW.ACT decided to develop
an innovative platform, an App and a website, which
will provide support many people in advocacy. The
App will allow end users, people with a disability, to
self-advocate, and give members of our community
a platform to launch a cause (advocate) for further
social change and support. This App will be
accessible to all registered users and will provide
an opportunity for individuals to have a stronger and
louder voice and to raise issues and concerns that
they care about.
Implications: Advocacy has never been as important
as it is in the evolving disability environment.
UnitingCare NSW.ACT is working to close this gap by
encouraging Australians with and without a disability
into the digital space, where like-minded individuals
can create a community, and join forces to fight for
justice and social causes they care about.
Annual Australasian
Society for Intellectual
Disability Conference
Making it real ... together
Save the Date!!
11-13 November 2015
Crown Promenade Southbank, Melbourne
A platform for delegates to come together and explore what is means to
convert recent advances in disability legislation and policy into real and
meaningful changes for people with intellectual disability.
The conference will bring together a range of stakeholders: people with
intellectual disability and their families and support persons, coordinators,
disability support workers, researchers from universities, health
professionals and policy makers, to share and prompt new ideas around
the idea of collaboration and inclusion.
Making it real ... together.
www.asid.asn.au
ASID CONFERENCE 2014
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www.asid.com.au
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ASID CONFERENCE 2014