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…..

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

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

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

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

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

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

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

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

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

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 ?

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

Available at http://supportinginclusion.weebly.com (password encounter

Mod 7 vid 2 Mod 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