The document discusses challenges and promises of the NDIS for people with intellectual disabilities. Some key points: - The NDIS promises choice and control, but people with intellectual disabilities have difficulty making decisions independently and exercising choice without support. - Specific challenges include lack of advocacy, difficulty navigating the system, complexity of support needs, and reliance on others. - Research shows the importance of supported decision-making and enabling people to participate in their communities through skilled support staff. - Broader issues include the need for evidence-informed purchasing to avoid low quality or segregated services, and pressure on mainstream services to be more inclusive.

1. latrobe.edu.au CRICOS Provider 00115M
Delivering on Promises NDIS and
People with Intellectual Disabilities
WA ASID conference October 2015
Professor Christine Bigby
Living with Disability Research Centre
La Trobe University, Melbourne, Australia

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Outline
NDIS Promises
Foundations of the NDIS
• inherent challenges
• specific challenges for people with intellectual disability
Meeting challenges - exemplars from research – at individual level
• support for decision making
• enabling and skilled support
Broader collective approaches
• scheme design issues – evidence informed purchasing –
indicators of effective services
• pressure for mainstream change

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Promises
‘once in a generation economic and social reform agreed by all governments
and will benefit all Australians’
NDIS Act 2013 Objects 3 part 2
(e) enable people with disability to exercise choice and control in the
pursuit of their goals and the planning and delivery of their
supports;
(g) promote the provision of high quality and innovative supports that
enable people with disability to maximise independent lifestyles and full
inclusion in the mainstream community; and
(h) raise community awareness of the issues that affect the social and
economic participation of people with disability, and facilitate greater
community inclusion of people with disability; and…..

4. Individualised Funded Packages One Part of the Puzzle
Conversion
through Disability
service providers
(adapted from ILC Policy Framework NDIS,2015)

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Some inherent tensions
• Won on the economic arguments
• Insurance scheme – not welfare
• Economic benefits +1 % to GDP and save $20b yr. by 2035.
• Embedded in neo- liberal ideology
• Individualism – consumers rather than citizens
• Power of market – to deliver cost and effectiveness
• NDIS should “maximise the benefits of a market-based approach to disability
support services... fosters competition and choice, and supports an
individualised and localised approach (COAG 2012)
• Light touch of regulation
• Thin rather than thick rights
• Individual choice and procedural fairness v participation in production of
policy and services
• Consensus campaign - fast roll out - little debate about details
• Reliant on interface with the mainstream
• Evidence or simply choice drive plan and purchases

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Specific challenges for people with intellectual disability
• Not very good consumers
• difficulty making claims, decisions, exercising choice and control
• little social capital
• low expectations and traditions of paternalism
• Vulnerable to abuse or poor quality services
• Support needs complex – more than personal care or equipment less linear
[rely on skilled support to be negotiate social world, be engaged, participate ,
maintain relationships, trouble shoot ]
• Minority remain in small and large institutions –[approx. 3345] contrary
UNCPRD
• Difficult to disentangle origins of support – system interfaces (CJC, MH, early
on set dementia, indigenous)
• Mainstream not easily adapted – easier to think about lifts and ramps
• Rely on others to support involvement and commentary
• Relative absence strong specific advocacy – not well represented by DPO’s

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Uncovering neglect in design through the trials
Underestimates of transactional complexities for people with intellectual disabilities
• Making claims
̶ simplicity of early planning
̶ recognition need others around
̶ preplanning processes
• Tasks of conversion – from $ to package of quality and coordinated services
- need for case management or coordination
- limit supply - info re effectiveness
Housing initiatives stalled - Many rolled into the scheme but life as usual
Adequacy of pricing levels for skilled support
Unrealistic expectations of LAC’s re inclusion support and knowledge
Omission of people with intellectual disability or representatives from governance
or advisory bodies
Outcomes framework – based on self or proxy report
Whose making decisions - unclear expectations of supporters - nominees as last
resort

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Imperatives to provide support for decision making
Good support for decision making pre requisite at preplanning, planning, action
stage of plans and day-to-day lives
NDIS Act reflects intent of UNCPRD & Australian Law Reform Commission
“the will, preferences and rights of persons who may require decision making
support must direct decisions that affect their lives” (ALRC, 2104 para 3).
NDIS Act Section 5
(a) people with disability should be involved in decision making processes that
affect them, and where possible make decisions for themselves
Provisions to appoint plan nominees
Expectations placed upon them
‘ Ascertain the wishes of the participant and to act in a manner that promotes the
personal and social wellbeing of the participant’
Important shift in emphasis
• from best interests to will, preference and rights
• from informal and formal substitute to self generated and shared decisions

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Rationale for moving support for decision making into open
Enable development of skills and accountability of supporters
Development of frameworks for effective decision making support
• Remedy the current situation where little support for supporters
& few expectations of supports
• Uncover some of the conscious and unconscious influence of
supporters - who often have a stake in the decision ‘skin in the
game’
• Acknowledge interests of adult and family or other supporters
don’t always coincide
• Avoid less than transparent ways of resolving differing
perspectives
• Recognise some people have no supporters outside paid services
Not the same as advocacy or case management – ongoing – based on
knowing the person and relationships of trust

10. Delivering decision making support
• Various models
̶ Recruiting volunteers - OPA Vic
̶ Developing capacity of people with cognitive disability
̶ Supporting families or existing supporters
̶ Various types formal agreement -e.g. Canada – representation agreements
• Pilot support for decision making project at Kanangra - facilitators three roles:
̶ Working with families and staff - skills and confidence as decision making
supporters;
̶ Building a network of supporters
̶ Building relationships with and acting directly as decision making supporters
 Opportunity to translate research findings re decision making support and unpack
̶ Steps in decision making and support
̶ Components of effective support

11. Effective support for decision making - steps &
components – vary with each decision
Commitment
Orchestrating Others
Developing Strategies
Principles of Reflection & Review
Knowing
the person
Identifying
the decision
Understand-
ing the
person’s will
& preference
for the
decision
Refining the
decision &
taking
account of
constraints
Deciding
whether a
self-
generated,
shared or
substitute
decision is to
be made
Reaching
the decision
& associated
decisions
Implement
-ing the
decision &
seeking
advocates
if
necessary
Consider
if a more
formal
process is
needed

12. Commitment
• Relationship with the person
• trust
• genuine positive regard
• honest interpersonal interactions
• unconditional regard as a human being of equal value and a
holder of rights
• Positive expectations about participation in decision making
• Respect for their opinions and preferences
• Knowing the person and commitment to continually learning about
person, skills, preferences and circumstances

13. Orchestrating Others
 Support is a shared task
- Primary supporter leads and orchestrates others
- Involving people from different parts of a person’s life and who
know the person in different ways (e.g. immediate or extended
family, direct support workers, managerial staff, and subject
matter experts).
- Drawing in new people, both formal and informal from various
parts of the person’s life
- Mediating differences of perception

14. Developing Strategies
 Use individually tailored strategies
 Depends on timing and situational factors
 Significance, scope and nature of the decision
 Who else might be involved in or affected by the decision
 Attention to communication
- pitching information and communication at the right level
- awareness of verbal and behavioral clues
- checking back for understanding
 Education about consequences and practicalities
- making it understandable, doing the research
- presenting the options and pros and cons
- explaining consequences of decisions and that priorities can be
undermined by small decisions

15. Developing Strategies
 Listening and engaging to ensure all options are
considered
- attentiveness to will and preference
- taking the time
- using others as sounding boards
 Breaking things down
- breaking into smaller components that are shared across the
person and supporter
- teaching and shaping skills

16. Developing Strategies
 Creating opportunities
- active reframing that invites participation
- providing a sounding board
- acknowledging low expectations and building confidence
- testing options
- introducing and nurturing the seeds of ideas
- bringing in others to trial a situation
- creating distance to enable greater autonomy

17. Principles of reflection and review
• Decision making agenda is based on the will, preference and rights of
the person that can be realised in different ways under varying
circumstances.
• Neutral non-judgmental stance putting aside their own preferences
• Reflexivity, self-awareness and continuous reflection
• Transparency - describe support provided, the rationale behind it and
evidence of strategies
• Meeting the challenges of support for decision making for all people
with intellectual disabilities ?
• Greater use of nominees
• Training and support for nominees and other supporters based on
evidence not ideology
• Building support networks for people with no one

18. Skilled and enabling support to be engaged and be included
Not yet core to NDIA design in the same way as recognition of skilled support for
necessary for other groups – such as Auslan interpreters –or guide dogs
IFP currency hours of direct support - cheap – low skilled – little room for overheads
– based on attendant care model – simple companion or carer to be directed by the
person with disability
• does not reduce over time or build informal networks
Significant research evidence re enabling practice – tailored mix
• Direct hours - skilled direct support across settings based on Active Support
• Plus specialist input if necessary – behaviour plans and strategies
• Indirect hours - laying the groundwork in community groups or leaders – mapping
and analysis of groups or places
• Indirect hours - negotiating, resourcing, supporting others in groups or community
• Monitoring for change – flexible capacity for varying intensity/episodic
• Practice Leadership retain to focus - model, coach, supervise, team work, to
optimise available support
• Precarious mix of values and skills
• Who bears cost of training workforce ?

19. Exemplar of micro practice supporting or
obstructing encounters
Critical judgements need to make – when and how to facilitate or initiate
encounters or intervene
Ways to avoiding obstructing opportunities – conveying negative
messages
Modelling and coaching skills for community members
Intro to clips (overpage)
• Supermarket example skilled prompting to initiate encounters
• Street and group support workers obstructing encounters
• Hairdresser clip getting in the way and poor modelling to others
• Rolling sleeves subtle support to strangers to ease encounters

20. Available at http://supportinginclusion.weebly.com (password encounter
Mod 7 vid 2Mod 5 vid 2

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More collective challenges
Building thick rights to be part of the design generate a voice about people with
intellectual disability
Leadership and advocacy – multiple sources, services, self advocates, academics,
and advocacy within advocacy
The case for evidence informed purchasing and limits to choice - housing not
segregated, not congregated, employment not exploited
Quality framework beyond compliance and paperwork
̶ More robust evidence of outcomes using inspection and observation
̶ Indictors of service effectiveness demonstrate provide support that makes
a difference in people lives - available for service users
̶ SA Service effectiveness framework -’ we increase relationships people
have’
Pressure on mainstream – beyond individual to systems – professional
associations – education and training of professionals