Promoting Independence

Promoting Independence for People with Disability

BRIEFING P APER FOR THE NDIS INDEPENDENT ADVISORY COUNCIL

COUNCIL MEMBER : KURT FEARNLEY

WRITER: BELINDA EPSTEIN-FRISCH

Introduction
The tragic fact is that on all indicators, people with disability fare much worse than their
peers in the general population. They are much less likely to be engaged in education, in
work and in community and their families and carers are less likely to be engaged socially
and economically and are more likely to be experiencing social isolation and poor health.

Multiple factors in State and Territory based disability service systems have encouraged
and rewarded dependence rather than independence. People have been encouraged to
exaggerate need to secure and retain funding and to become dependent clients rather
than citizens. The capped funding has meant that service systems respond to crisis rather
than early intervention and hence people with disability enter the service system at a time
of heightened need and heightened dependency.

The NDIS provides the opportunity to turn this negative cycle around; its early intervention
approach can reward capacity and initiative – people do not need to be fearful that their
increased capacity, their increased independence will leave them high and dry without
support. The NDIS aims to provide confidence that reasonable and necessary support
will be adjusted to reflect changed circumstances.

A key question however is what factors impact on opportunities for independence and
what should the NDIS do, in all its functions, to maximise opportunities for participants to
maximise their independence. Answers to these questions have the potential to be
transformative for the individual and their family and to promote sustainability for the
NDIS.

This paper brings together Council discussion on the questions of what is independence
and what factors impact on opportunities for independence. Key themes from research
are summarised, followed by an outline of a growing body of literature about promoting
independence in young people with disability aged 18 to 25. Implications of this literature
will be drawn for adults over 25 and further writings (mainly aimed at parents) are
presented to focus on independence of children and young people under 18.

The paper explores systemic barriers to independence and provides guidance as to what
independence might look like in eight life domains. The paper concludes with a discussion
of the implications for reasonable and necessary support as well as tier 2 resources to
support independence.

Defining independence
In the context of disability, the concept of independence does not confine itself to such
traditional criteria as living in one’s own home, or being employed in an appropriate job. Rock

Independent Advisory Council October 2014 Page 1

Promoting Independence

(1988) argues “Independence for young people with disability means having choice and
control of their life and their environment”.

The UNCRPD emphasises that independence for persons with disabilities encompasses:

 Individual autonomy;
 The opportunity to be actively involved in decision making processes; and
 The opportunity to access the physical, social, economic and cultural environment.

Building on the UN definition, if the NDIS is to enable and assist people to achieve Individual
autonomy, it must assist people to develop their own identity and maximise their self-reliance
and self-direction. The goal of independence requires that people have access to the same
opportunities in their physical, social, economic and cultural environment as their peers
without disability and they must be supported to have meaningful choices and make
meaningful decisions about the management of their life.

The term independence for people with disability however often conjures up visions of being
‘fiercely independent’, of valiant efforts to achieve self-reliance with loneliness and isolation
as the result. One of the basic needs of all people is to be valued and loved and ‘fierce
independence’ seems quite counter to this other most profound need. In fact, relationships
with people who care about (not necessarily care for) an individual provide the most significant
safeguard for a vulnerable person.

Thus this paper argues that independence, achieving autonomy, making decisions about
one’s life and engagement in one’s community is best achieved in equal valued partnership
with others, i.e. as interdependence.

Key themes in literature on independence

Contemporary literature reflects on the changing nature of independence as family
structures change and the increasing need for individuals to take responsibility for
decisions in relation to actions over which they have little control.

Three themes emerge from the literature that focuses on factors that impact on
opportunities for independence: identity development, resources and support and
attitudes.

Research reveals that the stories people tell reveals how people shape their identity and
these stories are made possible by the networks to which they belong. Whilst young
people with disability have the same hopes and aspirations as their peers without
disability, they have less opportunity to develop social networks and this inhibits the
development of identity and independence. Identity making is strongly linked to
opportunities for meaningful decision-making but young people with disability have been
shown to ‘lack voice’ in decisions about their lives.

A number of studies identify family support (attitudes and material resources) as the
single most important contributor to a young person being able to maximise independence
and transition into adulthood. The general attitudes of society however continue to be a

Independent Advisory Council October 2014 Page 2

Promoting Independence

barrier to independence whereby stereotypical assumptions and low expectations make

people with disability feel invisible, not respected and excluded.

Independence in young people 18 to 25

A recent literature review from the University of Melbourne “Young People with a
Disability: Independence and Opportunity” by Stokes, Turnbull and Wyn provides an
excellent synopsis of research directed to the question of what factors impact on the
opportunities for independence for young people with disability.

Changing social context for young people today

Bauman (2001) and Beck and Beck-Gernsheim (2002) identify the changing meaning of
independence as family structures change and life course becomes de-standardised. They
highlight the need for individuals to take personal responsibility for decisions in relation to
actions over which they have little control. Young people have little choice but to learn how to
live with new realities such as labour market unpredictability and the fragmentation of
traditional pathways through education and work. Studies document the trend for young
people to rely on family resources (social and material) until they are well into their twenties
and to be forced to make decisions about things over which they have very little choice
(Woodman, 2009).

Three themes emerge in regard to the research question: What are the important factors that
impact on opportunities for independence for young people with disability? These themes are
identity development, resources and supports and attitudes.

Identity development

A traditional psychological approach describes the period form 18-25 as emerging adulthood,
where different directions are possible and young people undertake character development
necessary for the transition to adulthood and the acceptance of responsibility.

Other theorists (Kehily and Nayak, 2008) argue however that identity development has
become a task rather than a ‘given’; growing up is about becoming rather than finding a fixed
(or adult) identity. The implication of this are that in a changing and unpredictable world, young
people need to develop identities that enable them to negotiate their own pathways. From this
perspective, the task of maintaining and re-developing identity is ongoing, not limited to
particular life phases and not completed.

Social relations

Research reveals how the work that young people do to shape identities is revealed in the
narratives or stories they construct, and are made possible by the social networks to which
they belong (Stokes 2012). Wirerenga (2009) notes that young people’s stories reflect the
worlds to which they have been exposed and in which they have already engaged. So whilst
identity formation is an individual task, identity is made possible through social relations.

Yueng, Passmore and Packer (2008) conducted a study of nine young adults with cerebral
palsy to ascertain their views about citizenship. Whilst they were living in the community, they
faced isolation and loneliness as a result of having limited social networks. Yueng et al noted
that it takes a long time to develop social relationships and that a young person might have to

Independent Advisory Council October 2014 Page 3

Promoting Independence

engage in an activity many times before they were recognised by others and social interactions
began to occur. It was noted that opportunities to form social networks were often mediated
and dependent on paid carers who may be more informed of duty of care than promoting
social interaction. They stressed that simply having people in their lives (for example, paid
carers) does not equate to having social networks and friendships.

D’Eath and Walls’ (2003) study of young people with intellectual disability in Ireland highlights
the important part that social relationships play in the process of identity development. They
found that during the process of transition to adulthood, friendships and peer relationships:
provide support in the task of adjusting to new environments; function as a mirror, helping
adolescents to gauge how others see them and assisting in development of self identity; assist
in negotiating relationships by establishing norms of behaviour; and provide a sounding board
for exploring values and aspirations.

Engagement with peers and friendships support young people in their developmental
processes. Peer relationships are critical for the development of independence but literature
suggests that a shortage of opportunities for social interaction (compounded by lack of
transport and lack of autonomy), rather than a lack of desire to participate, distinguishes young
people with disability from their peers without disability. This is consistent with other research
that demonstrates that young people with disability have the same hopes and aspirations as
their peers without disability in term of accessing more training and education, making a lot of
money, accessing sports and hobbies and having a long term relationship or marriage.

In summary, research emphasises that young people with disability have less opportunity than
young people without disability to develop social networks and have less opportunity to
develop stories or narratives of themselves that draw on a wide range of resources and social
interactions. Their reduced opportunities are compounded by the fact that much of their social
interaction is mediated by a third person (either a support person or family member). So while
young people with disability need more time to develop meaningful relationships, they actually
have less opportunity to do so.

Decision-making

Identity development is linked to opportunities for meaningful decision-making. In particular,

young people need to have capacity to embrace decision-making (choice) and accept
responsibility for building their own futures. Studies that examine the role of young people with
disability in decision-making process about their lives highlight their ‘lack of voice’, that they
are not properly acknowledged or involved at crucial points in the journeys to adulthood.

Studies by Stokes, Stokes and Tyler and Yueng identify what it takes to facilitate young
people’s involvement in decision-making. Stokes and Tyler (2001) found that young people
without disability needed about four sessions with an advisor to build up enough trust to start
talking about possible futures. Yueng et al (2008) found that young people with disability
needed more time to develop social relationships than their peers without disability. It follows
that they may need more time to build the trust required to enable them to access resources
that will assist them to make good decisions about their futures.

Independent Advisory Council October 2014 Page 4

Promoting Independence

Managing risk

Risk taking is seen as a developmental hallmark of typical adolescent behaviour. Ponton

(1997) argues that risk behaviours can have benefits because they are associated with the
development of independence and survival without the benefit of parental protection. It can
also be argued that risk taking behaviour can help foster independence in adolescence and is
viewed as assisting in identity formation (Le Breton 2004).

Sociological frameworks tend to focus on the conditions that place young people at risk
showing there is a direct association between a young person’s level of social support and the
number of health risk factors they exhibit. Correspondingly, studies show that young people
with disability are more likely to engage in risk taking behaviour.

The literature reveals that families face a dilemma in deciding what is an acceptable risk but
in order to make informed decisions, young people with disability, like their peers without
disability, need to be able to make mistakes and learn from them. This finding highlights the
need for information and support to assist families and young people with disability to make
informed decisions.

Resources and supports

For young people with disability, family support is the single most important contributor to a
young person being able to maximise independence and transition successfully to adulthood.
Dyke, Leonard and Bourke (2007) argue that of all predictors of success, having parents
involved in all aspects of the transition process and experience is critical. They see an obvious
correlation between the young person’s success at achieving transition to adulthood and
parents who are supportive and encouraging, are strong advocates and have clear
expectations of their child’ abilities.

Socio-economic factors impact on possibilities for choice for all young people including young
people with disability, especially at points of transition. The fact that many parents have to
give up employment when their child leaves school can have profound implications for the
family and the person with disability. A recent AIHW (2009) study of carers highlights finance,
service provision, workforce participation, stress and burden as significant and ongoing issues
with many carers reporting difficulty in meeting everyday costs of living, needing to meet
additional costs associated with caring, having restricted income earning capacity because of
caring responsibilities and having greater difficulty in balancing caring and workforce
participation.

Pascall and Hendy (2004) and Dyke, Leonard and Bourke (2007) acknowledge that the most
independent you people are generally those with parents in higher socioeconomic strata
whose parents had ‘skills, time and money’. They found what they called ‘unusual conditions’
underpinning these young people’s move to independent living including having received
compensation payments, having socially advantaged and professional parents with
knowledge of networks and negotiation, and having parents who had prior experience of
disability.

Independent Advisory Council October 2014 Page 5

Promoting Independence

Attitudes

Families find themselves in multiple binds as they attempt to steer their children toward
independence. The dilemmas include

 Wanting to create opportunities for the young person while seeking to ensure he/she
is safe
 Wanting to ensure the young person has a good life while wanting their own separate
life
 Wanting to ensure the young person has a separate and fulfilling social life while
wanting to be less involved in the social life themselves
 Wanting to maximise their child’s potential while wanting to accept him/her for who
he/she is.

Studies of family attitudes to sexuality demonstrate parent’s anxiety over their child’s sexuality
often leading to overprotection and inhibiting independence.

Whilst some studies demonstrate positive attitudes and community inclusion of people with
disability, negative attitudes have persisted and have been ranked as one of the most
commonly mentioned external barriers to participation. Yueng (2008) also found that
stereotypic assumptions, low expectations and misunderstandings about particular
impairments impacted on young people.

Mirfin-Veitch (2003) emphasises the destructive role of low expectations in the classroom that
adversely influences the child’s performance and self esteem. Lewis et al (2007) note the
stress and discomfort felt by many young people with disability at having the distinction of
being ‘special’ of ‘different’ reinforced insensitively.

In summary, the literature reveals that attitudes in school, workplaces and the community
continue to be a barrier to inclusiveness, promotion of independence and opportunity for
people with disability.

Literature from other cohorts

Adults older than 25

For adults older than 25, one can infer most of the findings of the literature still hold. For many,
the role of parents will have diminished, either because the parents are tired and/or no longer
in the picture. The role of services in promoting independence becomes even more important
and hence incentives to promote independence must be explored.

Children and young people

The seeds of independence in adulthood must be sewn at the earliest age. Where family,
teachers and peers give messages of individual identity and capacity, a child or young person
will come to see him or herself in a positive light, conducive to independence.

Literature about promoting independence and self determination in children focuses on

assisting the child to express choice, identify preferences, have some sense of control over

Independent Advisory Council October 2014 Page 6

Promoting Independence

their environment and a sense of autonomy in the own lives. It is about helping a child know
who she is, what she wants, and how to go about getting it. Some examples of self-
determination in early childhood are choosing who to play with, where to create a block tower,
or getting napkins from the drawer to help set the table for dinner.

For children with disability, acquiring skills related to self-determination and independence is
especially important. This is because their freedom to move around, express themselves
clearly or interact with others may look different than what other children typically do. The
challenge for families is to avoid overprotecting a child or preventing the child from taking even
small risks, leading to a sense of helplessness and dependence rather than self-reliance.

There are few studies in this area but literature aimed at parents encourages independence,
recognising that many children with disability are sheltered from taking risks. Parents are told
that independence helps the child by teaching him/her that it is ok to make mistakes, learn
from them and take responsibility for the decisions and choices they make.

In order to promote independence, parents are encouraged to enable children to make

choices in as many areas of their life as they can. Factors seen as facilitating independence
include having reliable information, a good self image, some personal privacy and space,
having the freedom to make mistakes, having the support of other people, being able to initiate
requests for assistance from people who are paid to provide care and having aids and gadgets
that enable the child to do things without help.

In addition, age appropriate opportunities to develop friendships and networks, take risks
(supported by safeguards), spend time away from family and be supported to interact with
others away from parents and paid people will contribute to identity formation and age
appropriate independence.

Considerations for people with additional vulnerability (ATSI, CALD, rural and
remote)

See discussion in an ordinary life paper

Systemic barriers to independence

Whilst the service and education systems talk about promoting independence, there are many
practices in early intervention, in disability services and schools that promote dependence
rather independence. Old style early intervention often left parents with the unspoken
message that children learn best in one to one interaction with a skilled adult. The value of
environmental learning from peers, from interaction with family and from free play was
underplayed. It led many parents to seek wrap around support (from teachers’ aides) in early
childhood settings and in school. Whilst this is not the case in contemporary practice, parent
anxieties often turn into a demand for full time support that gets in the way of forming
relationships with peers and moves to independence.

The vast majority of schools, both regular and special schools have a tendency to velcro staff
to students creating learned helplessness and dependence and thwarting the development of
natural networks of helpful friends. Whilst some students do need significant support, that
support must be crafted very carefully in order to facilitate opportunities for other children to
interact and assist where necessary. Enabling children with disability to learn to appropriately

Independent Advisory Council October 2014 Page 7

Promoting Independence

ask their friend or classmate for assistance is a skill of independence that cannot be acquired
if adults surround a child.

Disability services also provide support in ways that promote dependence. The much sought
after individualised funding is too often used as a paid friend with whom a child, young person
or adult can share an outing. Whilst pleasant at the time, paid friendship promotes dependence
and only creates the demand for another slot of paid friendship. Where support workers are
guided by expert facilitation and trained to understand their role as life facilitators rather than
paid friends, their efforts are much more likely to lead to opportunities for relationships with
community members and a sense of belonging. This has been referred to elsewhere as
‘technical support’ and is a necessary underpinning to enable individualised support to
promote independence rather than dependence.

Service models that group people with disability significantly impede independence. Group
homes and day programs have developed under the guise that people with disability are better
off with ‘their own’ and because limited imagination anticipated that all support had to come
from paid workers. Research affirms better quality of life without necessarily additional cost
occurs when paid support is used to compliment informal support of family and friends to
enable even people with high support needs to live in their own homes and enjoy valued roles
in the community. What is often not recognised in funding formulae is that many people with
disability do not easily form relationships with people who want to play a role in their lives and
so investment in the development of informal support is required in order to enable this type
of lifestyle.

The attitude of services to risk has a major impact on opportunities for independence. Fear of
work health and safety claims have led services to seek to avoid risk rather than mitigate risk
through prudent planning and safeguarding. Ordinary activities of life become constrained as
common sense gives way to restrictive processes robbing people of ordinary opportunities for
a rich life.

There are many societal barriers that impede independence. Most people think of disability as
a tragedy and whilst almost everyone would avoid its challenges, this attitude has a profound
impact on the relationship others extend to a person with disability in ways that are often not
helpful for a full and independent life. These attitudes create a view of people with disability
as dependent clients who need to be cared for rather than citizens who want the same basic
things as everyone else and may need some assistance in order to contribute. It turns the
unique role and authority of parents into a status of carers that confuses people who deeply
love and care about a person with people who are paid to provide service (and often do not
care a great deal).

Compounded by poverty, these attitudes reinforce low expectations of people with disability
that too often lead to the self fulfilling prophesy of lives deprived of meaning and contribution.

Finally, and most fundamentally, where people are not exposed to different ways of doing, to
different ways of living, they are deprived of opportunities to see that despite significant
disability, people can lead independent valued lives included in their communities.

Independent Advisory Council October 2014 Page 8

Promoting Independence

What might independence look like?

Many people with disability, especially people with high support needs are forced into grouped
models of service provision on the basis of cost. These equations seldom take account of the
cost to the individual and society of increased dependence and poor quality of life nor the high
cost of maintaining capital associated with many grouped models.

Optimal independence occurs when people are included in community, using paid support to
complement informal support provided by family and friends. Optimal independence is about
inclusion.

In order to maximise independence, it is recommended that discussion about reasonable and

necessary support encourage movement along the continuum of maximising independence
in all life domains. Vision building will often be important as will deliberate strategies to build
informal support since a life surrounded by paid people is unlikely to yield the richness and
independence sought and is also likely to be beyond the capacity of the NDIS to sustain.

NDIS planners will need to be proactive in opening conversations that participants may not
have thought about. For a significant proportion of people, support to become more
independent will require upfront capacity building and continual mentoring. It will also require
planners to brainstorm with people the potential barriers to further independence and
strategies to overcome those barriers including adjustments to current arrangements to
facilitate greater independence. The need for intentional strategies cannot be underestimated.

Finally, services delivering supports must take active steps to promote independence
including through the adoption of evidence based approaches such as Active Support.

In summary, assisting participants to move toward independence requires:

 An encouraging, enabling approach that inspires people to try, supports and rewards
their efforts and provides a pathway, not a prescription or a stick.
 A recognition that asking and encouraging will often not be enough. Participants need
assistance to identify adjustments required to life, to the expectations of others, to the
way in which support is usually delivered to facilitate greater independence. If
independence was easily achieved, in most situations the participant would already be
independent in the specified domain of life.
 A recognition of the critical role of peers in promoting identity and providing role models
for greater independence. The development of relationships with people without
disability may be a necessary first step to increase expectations and provide age
appropriate guidance.
 A recognition that too much paid support may inhibit the development of freely given
relationships with ordinary people. Participants and their families may require targeted
support to develop informal support.
 Identification of possible ways in which technology may facilitate less dependence on
paid support.
 Supported opportunities for risk taking – supporting the participant to move gently
beyond his/her comfort zone to facilitate a learning opportunity from a challenge. Much
work may be needed with family and service providers to facilitate an opening in which
a challenge may be possible.

Independent Advisory Council October 2014 Page 9

Promoting Independence

 The implementation of conscious strategies such as Active Support in grouped living

environments. This requires staff to provide just the right amount of assistance to
enable service users to successfully take part in meaningful activities and social
relationships irrespective of their degree of their intellectual and physical
impairments. This approach means that a person might only take part in some
parts of a task; they do not have to do it all or do it independently to be involved in
some of it.

Domain Independence Strategies to promote independence

measure

Choice and Identity Recognize and respect multiple identities of each

control formation individual e.g. encourage people to see themselves, for
example, as a young woman, a member of a choir, a
beach lover, not just a person with disability

Decision making Actively encourage the use of a framework for supported

decision making such as the Victorian 7 principles (Vic.
DHS 2012) of:

1. I have the right to make decisions

2. I can make decisions
3. I might sometimes need help to make decisions
4. I might be able to make decisions about some
things but not others
5. I can learn from trying things out
6. I might want to change my mind
7. I might make decisions others might not agree
with

Encourage and support people to make daily life

decisions – when to get up, go out, where to go

In planning meetings, take steps to enable people to

make big life decisions e.g. where they live, what work
they do, the services they use

Self Help people to take steps to move along a continuum

determination from:
(have authority
and are Other people direct and manage the services for the
supported to individual
direct and Learning to manage and direct their own services
manage their
own services) Supported to manage and direct their own services

Able to manage and direct their own services

Independent Advisory Council October 2014 Page 10

Promoting Independence

Domain Independence Strategies to promote independence

measure

Daily life Increasing skills Provide training to facilitate increased skill

toward self
sufficiency Provide support to decrease reliance on paid support

Active choices Support people to make the adjustments required to

around nature of choose who assists them, how they are assisted, when
assistance they are assisted and where they are assisted

Travel without Provide travel training to assist use of public transport

support on
public transport

Relationships Existence of Support people to make the adjustments required to go

relationships out as an individual (not in groups) and to attend places
with people at regular times to facilitate being known and valued
outside family
and paid staff

Choice of Support people to choose who they have relationships

relationships with, how often they have contact with people and
assistance to extend relationships if desired

Pursue Support people to have contact when they choose and

relationships in in ways that they choose
ways and
frequency of
choice

Independence Support people to spend time with a friend without staff

in interaction or family being present

Engage in safe Provide people with training and support in sexual health
sex

Home Choice of home Support people to actively choose the model of housing
and support and who they live with and to actively plan
to achieve this goal

Control over Support people to make the adjustments required to

support in the have control over who supports them, how they are
home supported, when they are supported and where they are
supported, including when they get up and go to bed,
what they eat, when they go out, with whom and where

Health and Self reliant in Support people to take steps toward understanding the
wellbeing coordination of screening and services they need for good health and

Independent Advisory Council October 2014 Page 11

Promoting Independence

Domain Independence Strategies to promote independence

measure
health related assist them to make and keep appointments and
supports implement recommendations from appointments

Self reliant in Support people to take steps toward understanding

maintaining a elements of healthy lifestyle and making adjustments
healthy lifestyle required for a healthy lifestyle

Education Participation in Support people to choose and be supported in a

and training course of choice mainstream course over a course for people with
disability

Support people to choose and be supported in a course

in their area of interest

Work and Nature of Support people to choose and be supported in

valued social employment or
roles valued social - Open employment over sheltered employment
role - Valued social roles that demonstrate competence in
the area of their choice

Social, Nature of leisure Support people to genuinely choose (as against from a
community activities menu of options) leisure interests and activities, the time
and civic and location of the leisure activity and their leisure
participation partners

Engagement in Support people to become actively involved community

mainstream groups that reflect their interests
community
groups Support people to actively participate in community
discussion about issues of interest.

Voting Support people to understand the electoral system, to

register and to vote

Conclusion
The NDIS provides new incentives for people with disability to move from the status of
dependent users of service to that of citizens who are independent and exercise choice and
control. The UNCRPD understanding of independence is an inclusive one encompassing
individual autonomy, the opportunity to be actively involved in decision making and the
opportunity to access the physical, social, economic and cultural environment. NDIS plans
and supports need to be framed to assist participants to move in these directions.

The literature review highlighted key strategies that promote independence: assisting people
to develop their identities, supporting people to make decisions and strengthening families to
build positive visions that guide toward independence. The research reveals that young people

Independent Advisory Council October 2014 Page 12

Promoting Independence

with disability have the same aspirations as their peers without disability but have less
opportunity to develop and participate in social networks that will guide the development of
their identities, a key to independence. In addition, their ‘lack of voice’ in decisions about their
lives is a critical barrier to the development of independence and an important area for action.
Finally, a number of studies have found family support to be the single most important
contributor to a young person being able to maximise independence and transition into
adulthood: the challenge becomes supporting more families to provide the vision and support
required.

The unique nature of each person’s impairment combined with the unique nature of his or her
environment means that independence will be unique to each individual. This cannot be left
however as an excuse to leave people as dependent service users who are bystanders in
their own lives. It is in everyone’s interest to promote maximum independence for each person
with disability; it will provide the best opportunity for the individual to have a good life, it will
provide the best opportunity for their family to feel proud and connected and it will provide the
best opportunity for the NDIS to be sustainable.

The way forward

Conscious strategies are required to reshape the low expectations and conscious and
unconscious societal devaluation that push people with disability into dependence rather than
independence. The NDIS alone cannot tackle these issues but its paradigm shift opens new
opportunities to change attitudes.

Independence in reasonable and necessary support

The following recommendations are made in relation to reasonable and necessary support
to promote independence for each and every person with disability and participant.

1. Apply the ordinary life test in assisting a person plan their life

People with disability have the same aspirations as people without disability. The NDIS
provides reasonable and necessary support to work toward the achievement of those
aspirations. Hence in every situation, NDIS planners must help the individual to move toward
enhanced independence by addressing the age appropriate level of autonomy, decision-
making and economic, social and cultural contribution that one would expect of their peers
who do not have a disability.

2. Take active step to reduce barriers

Effective planning must anticipate barriers to the achievement of a goal and develop strategies
to overcome the barriers related to the negative impacts of societal stereotype as well as the
specific barriers related to identify goals. Failure to do so will leave plans as dreams rather
than practical steps to achieve dreams and may exacerbate low expectations and low self
esteem.

3. Recognise the critical importance of relationships

Independent Advisory Council October 2014 Page 13

Promoting Independence

NDIS support needs to focus on the development of relationships as a priority. Friendship is

a critical concern for most people and research has confirmed the importance of peers in the
development of identity.

The tension between independence and reliance on others is a difficult one for many people
with disability but being supported to be active agents in their relationships and having
maximum control over the what, when, where and by whom of support reinforces a person’s
decision making and identity and strengthens their autonomy.

Some people may need reasonable and necessary support to gain the skill base that is helpful
to build and sustain relationships. For others reasonable and necessary support may be
required to consciously bring other in to a circle of friendship or support.

For services, knowing, respecting valuing and understanding what is important to people may
mean prioritising things differently at a service level, such as helping people and support
workers to put into practice core skills involved in making and keeping friends.

4. Provide ‘technical assistance’ as part of the reasonable and necessary support

Often direct support creates and strengthens dependence rather than independence. Expert
facilitation is critical in order to assist paid staff to facilitate the development of relationships
rather than just provide paid friendship. Technical assistance may also be required to enable
children, young people and adults with disability to interact with others away from the
mediation of family and/or paid staff and to attain membership rather than remain peripheral
attenders.

5. Move toward independence in social, economic and cultural participation, in

daily living and in home

Table 1 provides a guide to independence in major life domains. The truism that each person
(with and without disability) is unique cannot be used as a justification to leave people with
disability as dependent clients. NDIS reasonable and necessary support and the services that
implement it have a responsibility to help people move along a continuum toward increased
independence. Table 1 aims to provide some guidance as to what independence might look
like in domains of life.

6. Ensure people are supported to make decisions

Decision-making is a vital skill in supporting self-determination. Assistance to increase skill in

making decisions is a critical feature of NDIS planning and support.

7. Promote opportunities for risk in an enabling and safeguarded way

Every planning conversation must include a sensitive and thought provoking discussion of
what might go wrong and what safeguards can be put in place to mitigate those risks.
Literature affirms the importance of risk taking for the development of confidence and
independence and hence safeguarded risk taking is an essential part of reasonable and
necessary support.

8. Demonstrate the value of and pathway to independence

Independent Advisory Council October 2014 Page 14

Promoting Independence

Planning conversations and the shape of reasonable and necessary support must assist
people to understand the importance of independence. It must provide vision building
opportunities and link people to role models that help them understand what independence
might look like for a person like them.

9. Encourage the use of more independent, less restrictive models of service

provision

For independence to feature as a priority for participants of the NDIS, planners will need to
alert people to alternate approaches and support people to move beyond the constraints of
traditional grouped services.

For this to be available for people with high support needs, reasonable and necessary support
will have to be able to be deployed flexibly to compliment informal support provided by family
and friends. With careful planning and deliberate strategies to build informal support, people
with high support needs can use the unit cost of shared living to live in their own homes with
a combination of paid and informal support.

Capacity building in relation to independence

Reasonable and necessary support must be underpinned by initiatives in Tier 2 that build the
capacity of people with disability, families and services to support independence. This includes

1. Vision building activities that shares stories and gives life to the meaning of, for
example, independence and real lives of people with high and complex needs;
2. Specific vision building activities for parents of children and young people to
demonstrate the value of independence, how to promote it and how to develop
safeguards to mitigate their concerns.
3. Peer support to guide people on the journey to greater independence and citizenship.
This is valuable for children and young people as well as adults.
4. Training and resources around supported decision-making so that families and service
providers build skills in ensuring that children, young people and adults with disability
are involved and supported to make decisions.
5. Training and resources for people with disability, families and services on risk
enablement and safeguarding that invigorates the dignity of risk and the opportunity to
learn from mistakes
6. Provide incentives for services to promote independence in participants

References
Australian Institute of Health and Welfare (2009b) Carer National Data Repository Scoping
Study Final Report Canberra: AIHW
Bauman, Z., (2001) The Individualised Society, Cambridge Polity
Beck, U., & Beck-Gernsheim, E., (2002) Individualisation, Sage, London
Bigby, C., & Bould, E. (2014). Guide to visiting and good group homes. Melbourne: Living
with Disability Research Group, La Trobe University.

Independent Advisory Council October 2014 Page 15

Promoting Independence

D’ Eath, M., & Walls, M., (2003) Quality of life of young people with intellectual disability in
Ireland reported in Stokes, H., Turnball, M., & Wyn, J., (2003)
Disability Services Division, Victorian Dept. of Human Services, (2012) Supported decision
making: a guide to assist people with disability to make their own decisions
Dyke, P., Leonard, H., & Bourke, J., (2007) Issues paper related to ARACY workshop:
Leaving school: Maximising participation and life outcomes in youth with intellectual disability
transitioning from secondary school to adult life, reported in reported in Stokes, H., Turnball,
M., & Wyn, J., (2003)
Kehily, M., (2007) Understanding youth: Perspectives, identities and practices, Sage
Le Breton, D., (2004) Risk taking behaviours among young people, Bulletin de l’Academie
Nationale de Medicine, 188(8) pp.1313-1321
Mirfin-Veitch, B., (2003) Education for adults with intellectual disability (including transitions
to adulthood): Review of the literature prepared for the National Advisory Committee on
Health and Disability to inform its project on services for adults with an intellectual disability,
Wellington, National Advisory Committee on Health and Disability, Donald Beasley Institute
Nayak, A (2008) Exploring socialisation, identity and culture
Novita Children’s Services, (2014) Promoting independence and letting go
Pascall, G., & Hendy, G., (2004) Disability and transition to adulthood: the politics of
parenting, Critical Social Policy 24(2) pp. 165-186
PBS Parents http://www.pbs.org/parents/education/learning-disabilities/fostering-
independence-in-children/
Ponton, L., E., (1997) The romance of risk: why teenagers do the things they do. New York
Basic Books
Rock, P. (1988) Independence: What it means to six disabled people living in the
community. Disability & Society, 3(1), pp27-35
Stokes, H., & Tyler, D., (2001) Planning for the future: the evaluation: Phase one of the
pathways project in Victoria, Victorian Department of Education, Employment and training,
Melbourne
Stokes, H., (2012) Imagining Futures: identity narratives and the role of work, education,
community and family, Melbourne, Melbourne University Press
Stokes, H., Turnball, M., & Wyn, J., (2013) Young people with a disability: Independence
and Opportunity: A literature review at
http://web.education.unimelb.edu.au/yrc/linked_documents/research_report39.pdf
Wierenga, A., (2009) Young people making a life, Basingstoke, Palgrave/McMillan
Woodman, D., (2009) “The mysterious case of the pervasive choice biography: Ulrich Beck.
Structure/agency, and the middling state of theory in the sociology of youth, Journal of Youth
Studies, 12 (3) pp243-256
Yueng, H., Passmore, A., and Packer, T (2008) Active citizenship or passive recipients: How
young Australians with cerebral palsy define citizenship, Journal of Intellectual and
Developmental Disability, 33(1) pp.65-75

Independent Advisory Council October 2014 Page 16