Unpacking choice and control: Issues
around people with cognitive disability
Lesley Chenoweth
Griffith University
Overview
 Background
 Legislative base
 Definitions - choice and control
 What does the evidence tell us?
 How can we maximise choice and control for people with
cognitive disability
 Choice and control continuum
Background
 The NDIS founded strongly on principles of choice and
control.
 NDIS reorients funding dollars AND the supports available
so that people with disabilities will have choice and control
over:
 their goals
 planning &
 delivery of supports
Legislative base
 Everyday life control and choice consistent with the United
Nations Convention on the Rights of Persons with
Disabilities.
 built on a principle of ‘equal opportunity’ according to which
people should not have less or more opportunity than others
on the basis of disability.
 The National Disability Insurance Scheme Bill stated:
4 (14) Innovation, quality, continuous improvement,
contemporary best practice and
effectiveness in the provision of supports to people
with disability are to be promoted.
Legislative base
The National Disability Insurance Scheme Bill Objects
includes:
(e) enable people with disability to exercise choice and
control in the pursuit of their goals and the planning
and delivery of their supports
And Principles
(4) People with disability should be supported to exercise
choice, including in relation to taking reasonable risks, in the
pursuit of their goals and the planning and delivery of their
supports.
Framework for Choice & Control
 Internationally and in Australia, research has shown that
reforms to disability and human services which embed
greater choice and control for service users have been found
to result in better life outcomes for people with disability, as
well as more efficient and effective service outcomes (KPMG
for NSW Ageing Disability and Home Care, 2012, p9).
Definitions/ meanings
 Choice – what one must do when faced with two or more
options.
 Highly valued concept but also very broad.
 Society values choice – linked to consumerism?
 Control – shifting power to the person/ family
 Related to self determination
 Linked to choice
The right to make choices is proposed as the cornerstone of selfdetermination. (Green, 2010)
Choice theories
 William Glasser’s choice theory
 We choose everything we do, whether we choose to be happy or
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choose to let others control our life and make us miserable.
All we can do is get or give information from others.
We are in control of our own selves and that information from
others cannot make us do anything.
All of our behaviors have a purpose, whether they are responsible
or not.
We choose to behave to improve our quality world and help to
meet our 5 basic needs.
Survival Power Love & belonging Fun Freedom
Choice theories
 Rational choice theory – from microecnomics.
 Economic principle that assumes that individuals always make
prudent and logical decisions that provide them with the greatest
benefit or satisfaction and that are in their highest self-interest.
 Most mainstream economic assumptions and theories are based on
rational choice theory.
 Public choice theory - the economic theory relating to how
much choice the public has in the economic decisions taken by a
government. The public does not have a single preference, but
many different preferences which can not all be reflected in a
government’s economic policy.
Choice theories
 Social choice theory - study of collective decision processes and
procedures.
 Not a single theory - cluster of models and results concerning the
aggregation of individual inputs (e.g., votes, preferences, judgments,
welfare) into collective outputs (e.g., collective decisions, preferences,
judgments, welfare).
 Central questions:
 How can a group of individuals choose a winning outcome from a given set
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of options?
What are the properties of different voting systems?
When is a voting system democratic?
How can a collective (e.g., electorate, court, committee) arrive at coherent
collective preferences or judgments on some issues, on the basis of its
members' individual preferences or judgments?
How can we rank different social alternatives in an order of social welfare?
Research findings 1
 Ticha et al (2012)
 8,892 adults with ID
 19 states USA
 Everyday choices – e.g. when to get up, go to bed, eat/ how to
spend free time/ what to buy with spending money
 and
 Support related choices - e.g. choosing who they live with, the
place they live, who helps them at home. Choosing where they
worked or spent the day, people who help them at work/ case
manager or coordinator
 Found that more people made everyday choices than made
support related choices
Research findings 1
 Everyday choices
 More choice associated with
 level of ID Mild ++ Severe less
 living arrangements own home > host family> small agency (2
to 3 residents)> large agency (16+ residents)
 Support related choices
 similar pattern to everyday
 Speech as primary means of expression – more choice
 State of residence contributed to large variability in supports
choice
Research findings 2
 Stainton et al 2011
 BC study families and support staff (N=852).
 Independent home/ family home/ family model home/ group
home
 Measures
 Information & planning
 Access to and delivery of supports
 Choice and control
 Community connections
 Satisfaction
 Perception of outcomes
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Research findings 2
 On all measures except choice and control, group and
family model homes achieved better outcomes than independent
of family homes
 Group homes reported less control in hiring workers than those
in independent and family model homes.
 This is a puzzling result?
 Findings suggest that the move to independent living has not been
accompanied by appropriate supports
Research findings 3
 Finlay et al (2008)
 UK study 9 month ethnographic study of 3 residential
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services
Conflicting agendas Attending to the small things
Communication difficulties
Person centred vs active teaching
Interaction central to empowerment and disempowerment
Choice and control for people with
cognitive disability
 Choice and control appear to be influenced by
 Degree of impairment
 Living arrangements
 Communication style
 Attitudes of support staff
 Capacity and skill of support staff
 Availability of appropriate supports – e.g. location, funding,
innovation in services
Choice and control for people with
cognitive disability
 Potential choice issues
 Impact on others
 Controversial choice
 Unsafe choice
 Influenced by others in making choice
 Choice contravenes community norms to such a degree to be
publicly condemned
Choice and control continuum
Employ own personal assistants
DIY
FAMILY
/FRIENDS
Contract with an Agency/Provider
AGENT/
BROKER
SERVICE
PROVIDER
CARE
MANAGER
Some things to consider?
 People with cognitive disability will need support to make
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some decisions
Building support for everyday decisions builds capacity to
make other support decisions
Communication support is KEY
Living arrangements can impact of level of control
Skills and attitudes of support workers
Choice and control means you can change your mind – big
advantage of the NDIS