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

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

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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

c.bigby@latrobe.edu.au

http://www.latrobe.edu.au/health/about/staff/profile?uname=CBigby