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latrobe.edu.au CRICOS Provider 00115M
More than hours of support -
practice matters
Professor Christine Bigby
Living with Disability Research
Group [email protected]
NSW CID conference August 2014
2
On the Cusp of Opportunity
Chance to recognise poor quality and fix problems of past
• Doubling resources
• In the public eye
Is this vision possible
Choice and control and participation and social inclusion for
all people with intellectual disability – no matter what level
of impairment – how complex their needs
How to make it a reality
Things to takeaway as challenges to work on
3
Redirect Focus of NDIS on the Largest group – stop being
the poor relation
People with ID 60-70% - Largest group in the scheme
Most have complex needs - broadest sense – not just ID but also health, mental
health, physical, brain injury, involvement in CJ system, rural and remote all
have difficulty communication, problem solving, decision making
Choice and Control much more difficult – need significant support at all levels –
what service- what going to do today – whether shower or bath – for some will
only exercise at micro – important too
Hoist or hours of personal care won’t cut it for these group -
Rely on skilled support to be negotiate social world, be engaged, participate,
maintain relationships, trouble shoot in a crisis
Not just hours but skilled hours - come back to
Group not got the attention of the scheme – or at least not centre of
attention – on the periphery
4
Ensure people with cognitive disability the touchstone for the
scheme
Productivity Commission - heavily slanted towards people who can self direct
support - terms of – attendant care – hours of support – equipment
Replicated in NDIA and Scheme
Way senior people talked – examples they give – the visuals –
‘As close to ‘normal’ as possible’ has become the proxy – people without
cognitive disability in wheelchairs - people who can just tell you what they
want – can direct their own staff - need a few hours
Need to gain much greater presence of people with cognitive disability in the
very fabric of the NDIS
Make the 60 – 70% the touch stone – the examples, the illustrations the
anecdotes, the pictures in proportion to their significance
How many of 11% with disability have an ID? Need more – carve out jobs –
get a better balance – people will drawn on experience unless counter it with
other experiences
5
Joining the Conversation ‘ just talk to you guys’
But how and who
This is work in progress
Major merit - Openness to dialogue and conversations
‘ ‘hear from you guys’ ‘continue conversations together’ ‘ we need you guys to
tell us’ ‘ talk to you guys re what’s working’ ‘asking you guys what you need’
Not at simple as it sounds in a Free for all
Whose voice is being heard in debates – those with loudest voice - most
articulate- easiest to access – those with lobbyist
Look at composition of board, advisory groups, of parlt hearings – Not people with
ID or even those speaking on behalf of people with more severe and profound
ID
Poor relations are people with intellectual disability - vis NDS hugely strong body,
vis all disability groups not well represented – well intentioned but don’t notice
the absence - (Disability awards – doing or doing for )
Hard to access voices – Need skilled support – time - resources to enable voices
to be heard – look at way NSW CID organised – energy – cost
6
Recognise and hear diverse voices of 60% - 70%
Things in common but significant difference when talking about having a
say in the conversation
missing from conference and talks - people with severe and profound intellectual
disability – [get the worse outcomes in supported accommodation less staff
support than more able people ] who is speaking about their interests – people
in prison- in criminal justice system- care leavers
Point made by John Walsh – ‘need to understand types of support people need by
type of disability, level of supports and individual circumstances’ But to do so
need to make sure they are talking to whole diversity of people with disability.
And 60-70% should be people with intellectual disability
Proactive mechanisms – Support to make it happen
Learn from the UK – gaining access to voices embedded in structures
Joint positions for people with intellectual disability
Resource groups as consumer consultants around the country to get feed
back from to hear views – build into peaks
Can’t be all disability - different skill set to advocacy people with ID get left
out of all
7
Quality of support - Will more money in the system change
the quality of services and improve outcomes
Not necessarily [no unmet demand, less factors to undermine quality] [Swedish
system relatively poor outcomes for most, UK system multiple scandals
disability and mainstream
More resources – won’t improve quality and outcomes for people already in
system unless something else happens
Conservative start – ‘not looked around yet’ ‘consumer
Liz - Not purchasing for outcomes Yet
This is major challenges how to ensure NDIS money is used to purchase support
that will provide the outcomes – 2 steps what is it – is it available
Need to know what effective service/support is - what will get the outcomes
what are the ingredients need to purchase -
Have some really good sense of this for some groups – need to identify it
articulate it and ensure willing to pay for it or won’t be able to provide it
8
We do know quite a lot – Practice Makes the Difference
Work in supported housing Jim Mansell UK and Bigby et al in Australia last 10
years – and from practice wisdom people like Bruggemann for much longer
What staff do makes The difference – (Mansell & Beadle Brown 2012)
Illustrate using our finding on supported accommodation
Can show same funding – same model of support - enormous variability in
outcome and quality of staff practice between organisations and for people with
higher support needs
9
Outcomes and Staff Practice High and Lower Performing
Organisations Sample average and people with higher support needs – variability across and between
groups
Whole Sample Org 1 Org 2
UK study
Good active
support
(Ashman, Beadle-
brown, 2006)
Engagement in
meaningful activity
and relationships
47% (31%) 64% (54%) 25% (16%) 60% (54%)
Quality of Support
(Person Centred
Active Support)
49 (38%) 67 (64%) 28 (12%) 79 (79%)
Time spent receiving
assistance and
contact from staff
12 mins (11) 18 mins (15.5) 7.5 mins (6) 23 (25)
10
0
20
40
60
80
100
Org1<151
Org 1151 +
Org2<151
Org 2151 +
Org3<151
Org3151 +
Org4<151
Org4151 +
Org5<151
Org5151 +
Org6<151
Org6151 +
Org7<151
Org7151 +
Org8<151
Org8151 +
Org9<151
Org9151 +
Whole<151
Whole151 +
Pe
rce
nta
ge s
core
on
ASM
Active Support: People with More Severe Disabilities do
much worse than People with Less Severe Disabilities
Target 66%
• More able people experience better active support - exception Org 6 (& Org 7)
• Only 3 orgs provide consistent good active support for more able people
Sig difference
What Predicts Engagement – Intellectual
Disability Services Initial regression
Active support
Resident adaptive behaviour
Behaviour problems
Potentially/severe problem behaviour
Staff number
Staff length of service
Seniority of staff
Age of project
Staff turnover
Management development
Active support training of senior staff
Final regression
Active support
Resident adaptive
behaviour
From Mansell et al 2003
12
Need good practice – skilled support – not just for people with
challenging behaviour
Gray Raftl - talked about redefining behaviour support
enhancing delivery of opportunities to improve life – good support plan
Everyone needs good support – not a line item but something reflected in all
support that is purchased
Significant evidence base about impact of Person Centred Active Support
“Providing enough support to enable people to participate successfully
in meaningful activities and relationships (an enabling relationship),
If staff use active support consistently people with intellectual disability show
increases in engagement, growth in skills, more choice and control and less
challenging behavior (see Mansell and Beadle-Brown 2012)
Does not require more staff nor cost significantly more – available resources are
used much more efficiently in services where the support was skilled (Beadle-
Brown et al, in press)
13
Becoming clearer – what it takes to deliver good practice
Not done by individual worker in isolation – not training
Lots of propositions – about infrastructure –
Most evidence
Culture quite different where good practice
Practice leadership - coaching, modelling, supervision, team work, planned use
of staff on shift – overall focus of leader. Need skilled workers in teams with
leadership with infrastructure that supports that
Need to be built into all support services
Can develop indicators of effective services – based on evidence – work on ways
of ensuring consumers know and NDIS purchases
Need some parameters to what can be purchased– need to fund for outcomes-
based on evidence of what constitute good practice and organisations that
provide it – not just for people with high challenging needs but for everyone
14
Will the market provide effective support –without direction
Liz - Set up businesses - they operate we pay them –
Could be disastrous – especially for people with more complex needs
UK private providers shaping demand large specialist services convincing case –
few other alternatives but not delivering on promises-
20 bed specialist units – such as Winterbourne view– abuse – closure , criminal
Now moving towards much greater –regulation – observation going and see
15
Will some people benefit most - know from overseas yes –
those with social capital
Need to counter that
Almost every session raised – cohort of people who have no one – or have
families with limited resources and no social capital
Who will do the pushing for them
Advocacy – cannot be an optional extra
Multiple roles and level of advocacy - people’s lives are fragile
16
And the Elephants in the room
Leveraging access to mainstream services - farming analogy
Housing - Criminal justice system - Health
Where is the leadership and resources for the NDS?
Supporting decision making - how can you be sure it’s the right person or type
of support
Diversity of what people said the last two days, ‘happy to work with mother’ ‘I think
about some things differently from my mother’ ‘normal people don’t think
outside the box for people with disability ’
How is it decided who provides support with decision making
Who determines a person can’t be supported to make and decision and needs a
substitute decision maker ?
Are there circumstances where may be better to have substitute or more formal
status for supporter so there are obligations on the supporter to behave in
certain ways or can be challenged
17
Questions to ponder
How can build voices and perspectives of people with
intellectual disability into the very fabric of the system
How can ensure more money in the system changes the
quality of services and improve outcomes -
What steps are necessary to ensure the market will
provide what people need or want - and participants in
the NDIS are purchasing things that will lead to
outcomes - does the scheme need a heavier regulatory
hand
Will some people benefit most – advocacy may help to
can ensure equity
How can energy be directed to building mainstream
capacity
Who will support choice and decision making
18
References and further information
http://www.latrobe.edu.au/health/about/staff/profile?uname=CBigby