This document summarizes key challenges for ensuring the National Disability Insurance Scheme (NDIS) meets the needs of people with intellectual disabilities, who make up 60-70% of those in the scheme. It notes people with intellectual disabilities have not been at the center of attention in the scheme's design and implementation. It emphasizes the need to hear diverse voices of people across different levels of intellectual disability and ensure advocacy supports their participation. It also stresses the importance of funding supports that have an evidence base of effectively improving outcomes, not just providing hours of care, and ensuring the market delivers quality supports.

1. latrobe.edu.au
CRICOS Provider 00115M
More than hours of support - practice matters
Professor Christine Bigby
Living with Disability Research Group
c.bigby@latrobe.edu.au
NSW CID conference August 2014

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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

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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

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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

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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

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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

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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

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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

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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)

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0
20
40
60
80
100
Org1
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Org 1
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Org2
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Org 2
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Org3
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Org3
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Org4
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Org4
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Org5
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Org5
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Org6
<151
Org6
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Org7
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Org7
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Org8
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Org8
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Org9
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Org9
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Whole
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Whole
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Percentage score 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

11. 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

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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)

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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

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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

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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

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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

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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

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References and further information
c.bigby@latrobe.edu.au
http://www.latrobe.edu.au/health/about/staff/profile?uname=CBigby