Ideas for people who are ready to extend their social relationships
Ideas for people who are ready to extend their social relationships
Acknowledgements
Thank you to the individuals and family members who have contributed to this project. The
project has depended on people’s descriptions of their circumstances and experiences, and
their advice about the materials developed.
GCSS project team
Anne Fahey Project Manager and interviews
Kerri Hicks Interviews
Kim Fairbairn —Baker Family advisory worker
Dr Chris Fyffe Materials development
Chelsea Miller Communications and graphics
Consumer Advisory Group Consultation and feedback
John Willis Editing and feedback
Photos in this report and posters and tip sheets (where not otherwise credited) courtesy of
CreatAbility events between 2006 and 2013. Image on front cover, stock image from 123rf.com
For more information contact:
Anne Fahey
Manager Mental Health and Dual
Disability
Planning Manager
Golden City Support Services
(GCSS)
PO Box 297 Bendigo
Victoria 3552
Tel: (03) 5434 2724
Mobile 0438 506 716
www.gcss.org.au/
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Ideas for people who are ready to extend their social relationships
Table of Contents
Acknowledgements ..........................................................................................................................................2
PART 1: PROJECT OVERVIEW ....................................................................................................................5
1.1 Definitions ...............................................................................................................................................6
1.2 Why social connections matter ..........................................................................................................7
1.3 Summary of what participants in the project said ..........................................................................9
1.4 Framework developed for describing natural supports ............................................................. 11
1.5 Learnings about natural supports .................................................................................................... 12
1.6 How the interviews have guided the resource materials development ................................. 12
1.7 This project is just getting started .................................................................................................. 13
PART 2: DETAILS OF INTERVIEWS ........................................................................................................ 13
2.1 What is a good life? ............................................................................................................................ 15
2.2 Each person has different networks of relationships.................................................................. 18
2.3 Joining and being part of the community ....................................................................................... 31
2.4 Aiming to be inclusive: the perspective of one community organisation............................... 43
PART 3: STAFF DEVELOPMENT MATERIALS ...................................................................................... 47
3. 1 About these resource materials..................................................................................................... 47
Topic 1: Being socially connected is important ...................................................................................... 50
Topic 2: What sorts of relationships? ....................................................................................................... 58
Topic 3: Step 1: What sort of a life does each person want? .............................................................. 61
Topic 4: Being in the right place at the right time for natural supports............................................ 65
Topic 5: It’s not as simple as it sounds! ................................................................................................... 75
Topic 6: Where is the directory of natural supports? There isn’t one! ............................................ 80
Topic 7: Partnerships between individual, staff and families, what does it take? ............................. 83
Topic 8: Can staff be friends? Exploring roles for staff promoting social relationships ................. 87
Topic 9: Summary: ‘Do’s and don’ts.......................................................................................................... 92
PART 4: IDEAS ABOUT SOCIAL CONNECTIONS FOR INDIVIDUALS AND FAMILIES ....... 96
4. 1 Purpose of the resource materials ................................................................................................ 96
Topic 1: What are social connections and why are they important? ................................................ 98
Topic 2: What sorts of relationships are we talking about? .............................................................. 102
Topic 3: What can I do? What do I bring to a relationship? ............................................................. 107
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Ideas for people who are ready to extend their social relationships
Topic 4: What can families do? ................................................................................................................. 110
Topic 5: Ideas for joining a community group....................................................................................... 114
Topic 6: Quick tips: do’s and don’ts ........................................................................................................ 118
PART 5: REFERENCES ............................................................................................................................... 120
PART 6: POSTERS OR TIP SHEETS ....................................................................................................... 123
Staff — are you a bridge to the community? .................................................................................... 123
Getting started: how to connect with your community ................................................................ 123
Being local matters .................................................................................................................................. 121
Ideas for parents ...................................................................................................................................... 124
Forming relationships ............................................................................................................................. 124
Staff advertisement .................................................................................................................................. 124
PART 7: APPENDIX ................................................................................................................................... 125
Project design ........................................................................................................................................... 125
Method: what we did .............................................................................................................................. 127
Interview proformas and guides ........................................................................................................... 129
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PART ONE:
PROJECT OVERVIEW
Being socially connected to others matters. Feeling socially connected is a subjective experience.
This project aimed to describe the natural supports of people with disabilities who feel they are
socially connected and to learn from their experiences. All of the people were working,
volunteering, participating, socialising, developing and contributing in different ways, with
different networks of people, in their local communities. The nine people involved in the project
were young men and women with a range of disabilities (such as mental illness, intellectual
disability, ABI, physical disability and autism) and four family members. Their experiences have
formed the basis for the development of resource materials for staff, families and people with
disabilities.
These materials are not for everyone. Not everyone wants to spend more time with others, is
ready to or has the support to do it. The ideas which follow are for people who want to increase
the natural supports — that is, social connections — in their lives.
This report is divided into seven parts:
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Part 1: Project overview including rationale, and main findings about natural supports.
Part 2: Details of interviews with people who are socially well connected. This material
has guided the development of the resource materials in Parts 3 and 4.
Part 3: Staff development materials. There are nine discussion topics with information,
activities and reference to the interviews in Part 2.
Part 4: Ideas and discussion materials for individuals and family members. There are four
topics for idea and discussion.
Part 5: References.
Part 6: Descriptions of posters and tip sheets. These materials are six separate documents
to this main report.
Part 7: Appendix. How the project was conducted.
1.1 Definitions
‘Natural supports’ is the term used in the title of this project to refer to a variety of social
connections and relationships which promote social inclusion. Social inclusion is having the
opportunity to participate in learning, occupation, to engage with others, and to have a voice
(http://www.socialinclusion.gov.au/about/what-social-inclusion)
In these materials ‘natural support’ and ‘social connections’ and ‘social relationships’ are often
used interchangeably. Natural supports can include family, friends, acquaintances, coworker or neighbours and members of organisations or groups, and more. That is, any and
all situations where people get together, share or chat, briefly or over time.
Natural (or informal) supports are different from support and assistance from people in paid
roles, (although people in paid roles may also be a source of natural support in some
circumstances). The core role for staff is to ‘Work with people to support and sustain their
existing resources, assets, networks and relationships’ (Department of Health 2011).
Natural supports can involve people with and without disabilities. A relationship involving
natural supports is a two way relationship. Each person brings something to the relationship and
is sustained in some way by the relationship.
For this project the emphasis was on natural supports who were not family members or staff.
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1.2 Why social connections matter
Many people with disabilities, including psychiatric disabilities are socially isolated.
‘Most disabled people continue to be isolated, lonely and have few
friends.’ (Shakespeare, 2003)
‘Most people with developmental disabilities dependent on the service system
have very limited social networks and few friends.’ (Amado 1993)
Natural supports are important for physical and mental health and well being.
‘Social connection is increasingly recognised for its important role in mental,
emotional and physical health. Interpersonal relationships are the foundation
stones for building social capital and stronger communities. The value of
friendship seems simple and obvious. It is a very intimate aspect of life which is
largely assumed to be integral and spontaneously generated, given a modicum of
opportunity. But engagement in friendship is not necessarily easy or straight
forward for... people with mental illness… due to their capacity for social
connection… and ongoing social stigma… by which they experience social
exclusion.’ (Montclaire 2011)
Loneliness effects physical, mental health and human behaviour. Human services and
organisational practices can add to loneliness.
‘For the sake of people’s well-being, longevity, mental health and
positive social behaviour, practices in human services systems that
contribute to loneliness must be identified and altered.’ (Amado 1993)
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‘A major criticism of community-based services is
the difficulties these programs have in enabling
people with disabilities to participate fully in
community life and connecting them with other
community members.’ (Traustadottir 1993)
Natural supports can counter loneliness.
‘The quality and not just the quantity of social relationships affects the
feeling of loneliness; loneliness is unpleasant and not a good way to live life.
Even if a person is surrounded by support staff, case managers etc – they
could experience loneliness. People may be present in social situations but
not participating. Social participation is not friendship. People with low self
esteem, who find it hard to make friends, are likely to be the most lonely.
Loneliness affects human behaviour and physical and mental health
negatively.’ (Amado 1993)
Natural supports are inbuilt in participation and involvement in community and networks.
‘Communities and networks are important not just because they
make people feel happy and connected. Networks play a number of
other functions as well as emotional support: instrumental aid (lifts,
childcare, loans, finding work), appraisal (evaluating a problem or a
solution), and monitoring.’ (Shakespeare 2006)
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Natural supports can help to protect vulnerable people and ameliorate the likelihood of social
exclusion.
‘People with a disability or mental illness are often seen as ‘less than’
or ‘different’ in society. They are at risk of being rejected, isolated and
segregated and lead lives outside the rest of society. What can best
protect the vulnerability of people is the very thing from which they
are separated: ordinary citizens. For these people the lifelong exercise
of building, repairing and rebuilding a web of relationships in which
we all learn is denied to them.’ (Klees 2005)
Different approaches have been tried to establish and maintain natural supports for people who
are socially isolated and lonely.
The aim is for ‘the person to have a richer set of experiences; to have a
life more familiar to others – who can talk and relate to the person (ie
have something in common); to have more chances to learn and be
familiar and comfortable in other typical settings; to be surrounded by
more people who may provide natural support; and so increase the
likelihood that relationships of various kinds will occur.’ (Klees 2005)
1.3 Summary of what participants in the project said
All of the people interviewed described, in different ways, their openness to new experiences,
people and locations. Often this was also the pattern within their family.
In different ways, the starting point for a discussion was each person’s expectation to be involved
in the community with other community members, sharing common interests and patterns of life.
These people had a vision about the social relationships they wanted. Relationships were a
priority for their good life but what they wanted from these relationships varied. The common
theme was not wanting to be isolated or at home with nothing to do.
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There were several examples of how people made contributions to community groups and
friends. Connected people know how to build relationships and offer something to others. ‘If you
want to be in the community you have to give back’.
Often the foundation for community connections and friendships could be traced to childhood:
family, mainstream school, early development and experiences. The kinds of families who look
for more friends and social connections will look for/ find more connections for their children.
Everyone in this project who is well connected has been to mainstream school, lived for many
years in the same community or started their hobby, interest or sport in childhood.
The role of the family in supporting, modeling and creating social relationships was important
for some people. However, it cannot always be assumed that the family is close.
Building trust with others is key. Several people emphasised the importance of trusting people
and that this only occurred after regular and long term contact.
What is clear is that being part of a community, a network or having many social and friendship
relationships doesn’t just happen. It is not a single event, like going to the movies or
volunteering once. The connections were not all about friendships. Relationships, including
friendships change over time, and each individual had examples of successes and souring, or
things simply moving on. What these people had in common is their pursuit of, and belief in,
being part of and contributing to, their local communities.
Consistent with the key messages, the comments from project participants described:
 The importance of following personal priorities; of contributing to social situations and
being a natural support for others.
 The starting point is ‘what sort of a life do you want?’ Not the details but the guiding
directions. Identifying people’s interest and talents are a foundation for social
relationships and connections.
 Being part of a community, a network or having many social and friendship relationships
doesn’t just happen. Joining a group to pursue a common interest can be a good starting
point. Relationships often begin and are maintained from following an interest, study
and/or work.
 There are many different types of relationships. These can all reduce isolation and
loneliness.
 Relationships and friendships change over time, and each individual has examples of
successes and distress. This is a lifelong and repeated process and not just a consequence
of one relationship in time. There may be setbacks — for all sorts of reasons.. but people
keep going again when circumstances improve.
 Contributing to a relationship is part of being socially connected. Everyone can
contribute.
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There is no one way to be socially connected. People want different things from various
relationships - and what people want and how it is satisfied changes.
1.4 Framework developed for describing natural supports
Being socially connected means many types of relationships. For those people interviewed, the
majority of relationships with other people were not (close) friends. Relationships can be long
term, intimate or trusted relationships, passing greetings and acknowledgements between
strangers sharing a public space, while others will be discontinued or simply fade away with
changing circumstances.
Based on the interviews, a variety of natural supports and social relationships have been
identified.
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Friends. The people to share emotions, close events, social situations with; where there is
concern for and about each other, perhaps over many years. Friends may be in contact
often, occasionally or on special occasions like birthdays and when things don’t go so
well.
Family’s friends. Each family is a social network. There can be possibilities for
relationships with more distant family members or using family members’ networks and
resources.
Neighbours are people living nearby. People who share a living space as their
households are in close proximity. Neighbours can be in regular to occasional contact
over time; and neighbours can ask each other small favours and look out for each other.
Acquaintances are found in places where someone is a regular; people are recognised
because of frequently being part of a place, activity, pastime e.g. walking the dog along
the beach each day. Often these people can be relied on in a limited way (e.g. a taxi
driver).
Members and staff in community groups or organisations.
Colleagues at work or study, including from school.
Businesses where person is a patron or customer.
Social media and technology— various forms used to maintain contact.
Self help/ advocacy groups where people meet for common interests and causes.
Social action groups with a common cause.
Community groups with a common interest.
Brief greetings — people you simply greet in public spaces (such as sports grounds, the
local streets) because you are sharing a public space, perhaps regularly or occasionally.
Pets as a social bridge and source of companionship.
Staff and professionals who provide various support services.
Developing relationships is a lifelong and repeated process. Being socially connected is not a
consequence of one relationship at any one time. Being as much a part of the typical community
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as possible provides a foundation for the exploration of new experiences and increases the
likelihood of social connections forming. However, there is no way to guarantee satisfying
relationships and social connections.
1.5 Learnings about natural supports
The key messages from this project are:
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Everyone needs to feel connected to others, to belong to something, and to be a part of
the community.
People become mentally and physically unwell without it.
People with disabilities can be a part of their community.
Everybody’s different, there is no recipe. You can find your own ways to connect. It is
important to know first what sort of life you want.
Anyone with only staff and family in their life is missing out on other sorts of
relationships.
Staff and friends are different.
Being connected to your community is not all about friends. Look out for other options.
Relationships change/some are stressful or unsuccessful and that’s okay.
People can feel included in a common activity without lots of social interaction.
There are many different forms of social relationships and they can all contribute to
reducing loneliness.
Community groups can plan to be more welcoming for everyone.
There are different barriers and enablers to developing social connections arising from
different disabilities.
These key messages are communicated through the tip sheets and posters (see Part 6).
1.6 How the interviews have guided the resource materials
development
Natural supports are recognised as the fabric of daily life. Being connected in the community
isn’t always predictable, always fun, or static. Social connection is multi layered and means
many things. As a result, there is no one approach to being socially connected and the
information in the resource materials is not intended for others simply to replicate. Therefore the
exact arrangements for each contributor have been disguised to avoid readers simply flocking to
the same place or group. That would be missing the point. What can be replicated is how people
have become involved in community settings and social situations.
A welcoming setting, group or individual is specific to each person not a community resource
for every person with a disability. What the individuals involved in this project teach us is the
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importance of following personal goals; of pursuing personal interests and contributing to social
situations ‘as you want to’, and being a natural support for others.
The following information and materials are for people who are interested and at the point of
exploring new social relationships. We realise that this will not be all people with disabilities
and their families. Hopefully for these people and their families some of the examples and ideas
can assist with thinking about what might be possible for them in the future.
The initial project brief proposed the development of a community resources guide. Our
conclusion was that this is not the best starting point. The emphasis in the resources has been on
how to form and facilitate various social relationships. Our advisers and contributors described
too many examples of a local group being welcoming to one person, and then more people
simply chose that group as the ‘place’ for natural supports— but not because it was important to
them. The result was that community relationships were fractured for everyone. In summary the
resource materials have been developed on the basis of the following principles:
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There is no one approach, or recipe, for building natural supports and social connections.
What is right for one person will be different for another.
Natural supports are a two way relationship — not a place or an event.
Resource materials are best designed to assist each person, and their family, build the
relationships which suit them.
The following resource materials are not be for everyone. They are for people who are
ready to extend their social relationships.
The materials have ideas, experiences and supporting resources and activities. The information is
presented based on the participants’ interviews and then using those experiences for ideas and
discussion. The materials have adopted different perspectives: of staff members, family
members or individuals and support groups. Notwithstanding these groupings, the resource
materials will be best used when they are molded to each situation. For example, it may be
helpful for staff to complete exercises as if they were the individual, community group member
and/or family member.
1.7 This project is just getting started
This project builds on the experiences of people with strong social connections. Based on those
experiences we have developed materials which may be of assistance to other individuals, their
families and staff who are ready to extend their various social relationships. This was our project
brief. However, the project team now sees the advantages of further trialing these materials and
getting more extensive feedback.
The attached posters, or tip sheets, were developed to complement the resources materials. There
is scope to develop more resource materials and make several more posters from the information
gathered in this report. With the right opportunities to continue, this report is the start of a longer
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term process of development, evaluation and relevance for people with many different
disabilities and support needs.
PART TWO:
DETAILS OF INTERVIEWS
This project is built from interviews about the social experiences of individuals and family
members.
The interviews are reported using the framework for describing natural supports (see section
1.4), and beginning with ‘what sort of a life' is important to each person. The following material
is divided into descriptions of:
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‘What is a good life?’ from the perspective of members of a consumer advisory group.
The network of relationships described by Elly, Louise, Ed and Frank’s family.
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How Anthony, Amanda, Esther, George and Lisa each approached specific community
groups or roles.
The perspective of one community organisation wanting to be inclusive.
The people interviewed all had very different life stories including different disabilities. In order
to emphasise the ways people have established and maintained different social relationships, and
not the specific places where this has occurred, the identities of all individuals and community
settings have been disguised. ‘Italics’ have been used to denote direct quotes.
2.1 What is a good life?
Members of the Consumer Advisory Group, on several occasions, discussed the contribution of
natural supports to a good life and the importance of being socially connected in a way that suits
each person.
What makes a good life?
The group brainstormed what was important for a good life. The responses showed the
importance of:
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Being involved, being busy, and having purpose.
‘Well balanced with work and rest.’
‘Keeping occupied. Income, employment, volunteering. Community activities.’
‘Goals to achieve: reason to get up and get on. Stable. Depends what’s on for the day.
Something to get up for. May sleep in 9/10 am, wake up early, and have things to do or be bored.
Recreation.’
‘Relationships, engagements, work, play, having interests’.
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Having at least the basics of life (food, shelter etc)
‘Good sleep, access to resources, basics in life, somewhere to live, food.’
Good food, good entertainment.
Transport had specific mention:
‘Transport, important to get to and from when not much public transport.’
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Having good support through various professional and practical strategies, such as:
‘Physical, mental health. Medical support’. ‘Stress reduction strategies, e.g. meditation,
relaxation’.
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What are natural supports?
When asked about natural supports, a distinction was made between the roles and ways to
connect with professional and medical support and natural support, such as:
‘Natural supports need to be flexible, keep medical support due to knowledge, education.’
‘Natural supports occur more organically’.
People said that medical support always needs to go alongside natural supports. Medical
supports are critical and central to the life of person with a mental illness.
Some people noted that there can be a ‘blurring of roles between paid and unpaid support’.
It was recognised how natural supports can be lost if a person does not have other supports and
has to ask too much of natural supports, such as:
‘Lost close friends due to demands she had to make on them in the absence of other support.’
Conversely, natural supports may lead to greater understanding of mental illness by reducing the
stigma frequently experienced by people with mental illness.
Family or friends
Family and friends were recognised as people’s ‘first port of call’ for support, as they often
realise first when someone is not well. Family can offer very practical assistance such as, care
for person’s children, school, lunches, transport. Family can be of assistance accompanying
someone to the doctor, ‘checking emotional support and educating community groups/ schools.’
Group members noted that close family or friends ‘can help but not always.’ This was attributed
to family or close friends lacking time, expertise, or understanding (of mental illness). This
meant it was important to ‘not always assume family is in closest (social) circle.’ Similarly,
‘Families are not always in the picture or don’t think they can do anything to help.’
‘Person doesn’t always accept illness. Person doesn’t always accept help from family especially
if there are issues. Importance of knowing boundaries — when and where to provide support —
when to leave alone. Family might offer misguided support — may be counterproductive — not
understanding or having knowledge about how they can help.’
Role of the support group
The brainwork for describing natural supports includes the role of self help and advocacy groups.
Members of the Consumer Advisory Group identified how the group supported social inclusion
through ‘peer support rather than agency or paid service’. People used the group to ‘rebuild
skills and confidence’ preparatory to wider community participation.
‘Group helps people get back to community… a stepping stone.’
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Neighbours
Neighbours play an important role in social relationships for many people because of their close
proximity and sharing of daily routines. Starting the relationship ‘simply requires saying hello’.
Neighbours can have many roles. ‘Pets fed, mowing, look after place when away. Take others to
school. Cup of sugar. Watch over houses. Not too intrusive’. Typically the relationship is not a
close one, but could be as needed. Neighbours ‘step in if they think they are needed.’
Joining community groups
The first step is to ‘look for people’s strengths and talents and foster these in groups, for
example, group set up a team in table tennis competition’. Opportunities can grow from just one
experience or contact. ‘There was a snowball effect. First one contact or idea... then
another...CWA, Arts clubs, CWA knitting, mosaic groups with friends, U3A.’
Business workers to acquaintances
Several people noted that as a result of regularly going to a business, the workers would
recognise people and say hello down the street or even stop for a chat. ‘Bank workers stop for a
chat down the street’.
SUMMING UP CONSUMER ADVISORY GROUP
MEMBERS’ VIEWS
 A self help group is important for some people — to build confidence, feel
safe, share information experiences and learn from each other.
 Look for people’s talents and interests before joining a community group.
 Where possible have many interests and be involved in a variety of community
settings.
 Staff and professionals are important side by side with natural supports — the
roles are not the same. Sometimes the boundaries become blurred.
 Sometimes, people who are close can’t always help.
 Relationships can change and evolve — being a regular in a business means
also being recognised in other places like the park, supermarket or down the
street.
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2.2 Each person has different networks of relationships
The following interviews describe the different network of social relationships for each person.
a. Elly
Elly is a young woman living in her own flat. She had a clear personal vision: ‘to do as much as
possible myself. Normality.’
Elly describes herself as: ‘being prepared to try things; can tolerate knockbacks; doesn’t want to
rely on others; will seek help if needed; ‘don’t smother me’ message to staff; good understanding
of ‘wanting to do as much as she can;’ importance of taking responsibility; creates
opportunities’.
Elly has a sense of herself established before and after an accident.
Elly described various roles and relationships, anchored around the local community centre.
Friends
Elly had friends she had known before and after her involvement with the community centre and
weren’t restricted to the community centre. One friend was a former neighbour who had now
moved further away and Elly goes to stay there.
Neighbours
Elly described one neighbour ‘who does the bins’. There is incidental contact and greetings
between them occurring after 15 months of being neighbours.
Acquaintances
Elly described her relationship with local taxi drivers as a ‘trusted relationship.’ Being a local
means ‘taxi drivers look out for you.’ Also there were people she saw down the street who said
hello.
Social media and technology
Elly described ‘being in touch’ with friends using social media.
Community group and work
Being at the community centre is a significant part of Elly’s week. The centre is physically
accessible which is important. Elly knows she is welcome because people are: ‘friendly’; ‘don’t
change tone in voice’; ‘not patronising’; ‘ask about disability’. Importantly, ‘I don’t feel any
different’; ‘don’t feel judged.’
For Elly a sign of ‘belonging’ was ‘when I was included in the gossip’; and I was ‘confident to
ask questions.’
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Elly has several roles at the local community centre which is near to where she lives. She is a
volunteer, part of interest groups and is employed in an administration role. She felt that being at
the community centre three to four times per week meant she was accepted and it was expected
she would be there. She also makes a significant contribution through her membership,
involvement, and volunteer work roles.
Pets as a bridge and as companions
Elly had ‘introduced the cat’ to the neighbour.
SUMMING UP ELLY’S EXPERIENCES
 Elly noted the importance of ‘trust’: trusting others and the situation, ‘before
anything can happen.’ Trust is everything — and trust takes time to develop.
 The same place can involve different social relationships, perhaps depending on
people’s roles. The community centre is the hub for Elly’s interests,
contributions and social relationships.
 The community centre is very welcoming.
 Social media can be an important way to stay in touch.
 Being a local means people look out for you.
 Importance of building personal confidence and trying.
 Relationships change — neighbours might become friends, co workers might
become friends away from the workplace.
 Neighbours are important.
b. Edward
Edward is a young man, supported by his mother, who knows how he wants life to be:
‘A good life is a busy life.’
‘Can’t be bothered sitting around home.’
‘When you want something you go and get it.’
Ed says knows how to find what he wants, such as, ‘look on the internet, ring up, find out by
asking questions’. What he wants he goes out and gets.
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Being welcomed is very important to Ed. That is, ‘when people are friendly, they talk, they hang
out at other times. Never going back to place if they treat me different.’
Ed went to local mainstream secondary school and then Tafe. He went to a supported
employment setting for five or six years and then moved to other supported work.
Ed walks into town sometimes.
Ed knows how to entertain himself. He likes footy, music. He plays lots of music. He has three
guitars and practices by himself. He also goes down every Friday and Saturday night to local pub
and watches bands: ‘it’s a really good spot because the taxi is nearby.’
‘Sometimes I get bored but not often. If am, TV or play station games time in room. Lonely on the
odd occasion but plenty of friends so doesn’t get to me. Picks up the phone, mum says always
has the phone either on it or texting.’
Family and extended family
Mum and dad, one younger sibling and uncles and Aunties around town have been important for
Ed. ‘If I need them for anything I will talk to them. If I needed something they would help e.g.
rang Pa at 11pm at night when I had forgotten the key to get into the house’.
Extended family present opportunities for new relationships or occasional involvements when
people live well apart, such as:
‘I have a cousin... I’m looking forward to seeing new baby cousin Juliette.’
‘Some family in Queensland are visiting here.’
Friends
School friends have been important for Ed beyond school. Ed goes with mates from school to a
music venue — ‘sometimes they drive him home’.
‘I do hang out with the people I work with. I do see them or go out on some occasions. Mostly
go out with other mates — mates I went to school with. I did get some friends from work to come
out and be a part of the footy club.’
Ed explored what it means to be a friend as a friend ‘has just had a serious motor bike accident
and is now a paraplegic. I will see him, if he needs anything I will help out if he needs things
done. I have known him for a long time.’ A good friend is ‘someone who will support, have fun
with, a couple of drinks. Trust….mates who are really long time reliable.’
Community settings
Ed has several interests in different community settings — music, gym, dance and footy.
20 Golden City Support Services (2013) — a FAHCSIA funded project
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Ed enjoys listening to music. ‘They (publicans /crowd) don’t exclude him, treated like everyone
else (has had an experience where he was not allowed into the pub/night club… bouncer said it
was because of his rugby top. Three other males that he was with all had rugby tops on. Family
friends all felt it was this person who knew Ed and knew he had a disability). He has been going
to the local pub for a long time now.’
Ed goes two or three times a week to the local gym. The gym has the ‘same instructors … been
out there for a long time …nice place if you need a hand they will teach you. All very
approachable been going there long enough and have rapport and know people well enough’.
Ed has also been part of a dancing troupe since he was 17 or 18. The group has frequent
rehearsal and regular performances throughout the year.
Initially Ed came in doing the props. ‘Can’t remember exactly how but had been down watching
a rehearsal. Had an interest knew someone in the club and asked could he join the group. Went
down to the training and had a look one week and then went the following week. Phoned up and
asked. Having confidence, thinking about whether or not he really wanted to do it. Ed rang and
was told what nights to come and have a look. First session was “alright,” leader of the group
took a role in introducing. Ed ‘can’t remember whether Dad stayed’. Dad took him. People
were friendly, he hung round they chatted and included Ed in things.
‘Matt was the leader and talked through what to do. Four of the originals are still in the group.
Matt does most teaching, Ed does some teaching now. Up to 80 people attend three different
teams… train every week. Ed has a special role that no one else has.’
Ed said ‘I enjoy what I do, why do something if you are not committed to doing it, a lot of friends
there.’ Mum’s comment: Mum and dad and sister attend also and Ed sees some of the
volunteers outside the group at times clubbing and have come to birthdays and sometimes
picnics or outings including Matt’s mum dad and sister. “Mum and dad don’t interfere much”
dad takes him to the group and people drop him home. Ed not sure how this started .. can’t
remember Ed thinks he asked… Mum thinks it just evolved maybe they couldn’t pick him up at
one stage and they asked or family offered.’
Ed also enjoys watching the footy. He has been down to the footy AFL but not for a while now.
He barracks for Carlton. Ed does the local footy clubs stats of how many kicks and hand passes.
This all started from Dad’s contacts. Dad played with this club but Ed made the approaches after
he had been out there watching the guys for a long time. ‘Last year I spoke to a couple of the
guys/ coaches and said that I wanted to help out. I knew the guys by hanging around the club
and getting to know them. The club guys are friendly and I hang out with them at other times.’
Ed used to be at another footy club because of friends he went to high school with and his uncle
coached. But, he ‘felt like he needed a change, so I moved clubs’.
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Ed has also been involved with two other groups, but has discontinued these. ‘I’ve moved on
from that.’
Work colleagues and customers
Ed works at a disability employment factory, with sixty other people, doing packing three days
per week. Ed says: ‘I like the different people you meet… some of the customers… and its
busy…. , learning, get paid that I spend and save. Like to earn more but happy with number of
days working.’
Neighbours
One neighbour was very important when Ed was younger. As a young person he would pack his
bag when he was going to leave home. He was packing his bag to go live with them! These
neighbours have moved away but Ed and the family is still in touch.
SUMMING UP ED’S EXPERIENCES
 Friendships and opportunities sometimes grow from family connections,
sometimes from school friends and contacts.
 Some community clubs and venues are more welcoming than others.
 Sometimes it’s just time to move on to something else.
 Being a regular, just hanging around the club, for a long time, and we can all fit
in.
 Having lots of interests matters — things to do at home, things to do with
others.
 When people know you, they will offer a hand if needed e.g. a lift.
 If you want something — go get it!
 There are more possibilities in the mainstream community.
 Family and friends stick up for you!
 Being as independent as possible can help to be socially connected.
 Ed has many interests and is involved in a variety of community settings.
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c. Louise
Louise spoke about friends, neighbours and other relationships and her expectations for privacy.
It was her involvement with the gym that provided insights into community involvement and
what different people want from being included and how this is influenced by her mental illness.
‘Because I think my level of social inclusion has been limited in the last ten years but most of the
time that’s what I’ve needed. When I have a lot of social outings then that’s very draining on me.
On the outside looking in if you see social inclusion as things that supports mental health.’
Louise described what she contributed as being very similar to what she wanted from others.
‘I guess (I contribute) the respect, the same thing that I get , respect , giving people their space
and some of the men lift incredibly heavy weights and make quite an amount of noise when they
do so. I don’t turn and stare at people if they are trying to lift 250kgs.’
‘And also that polite friendly brief interaction, which I seem to be getting more confident with as
time goes by and even more confident in the space……But I’ve got the safety and privacy of my
own lounge area where I have my treadmill and I can watch TV while I’m on the treadmill,
which I enjoy because it doesn’t require anything of me socially.’
Louise agreed that a common and shared interest is the usual reason for people to get together.
Louise said she feels welcome when: ‘people greet me, and I return that greeting, people are
polite and respectful to one another. Those things also make me feel valued as well as welcomed.
People take time.’
Louise described being able to motivate herself if she was ever bored.
Professionals and staff
The people who are most important to Louise are ‘my 3 treating doctors, the GP , psychiatrist
and psychologist, my mum who is a registered paid carer, and also my friend and I have my
partner and I would say that those people are the closest.’
‘I mean if those things/ people were taken away from me my mental health would be terrible, I
would be really unwell, so I have to have those in my inner circle’.
Family
Louise stated playing sport from a young age, and her family also played sport. ‘I grew up in a
family where we use to go for nightly walks as family and my parents were very sporty as well,
so I grew up in an environment that where it has always been part of my life, and a management
technique for my mental illness has been walking and its usually been walking outside. Gym has
been an extension of that.’
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Family experiences set a foundation for Louise’s involvement with sport and gym. Louise’s
parents were both involved in the local community. Her mother used to be on the canteen at
school and her father helped run a youth sports group. ‘Mum actually was playing, began
playing when she was 35 in the masters netball so she kind of got back into it as well and my dad
joined a gym, so I guess it’s been around fitness a lot and the group activities.’ ‘My mum, she
gets the social side but she also gets that level of fitness but also belonging to a club, I think
gives her a sense of purpose.’
‘Yeah I’ve even watched, thought when I’m older I will be looking to something like bowls, if I’m
not working or that I find that I’m you know not getting enough stimulation outside of the home,
whether or not that will be bowls or something else.’
Bowls is another one of those sporting activities that everyone focuses on the sport and you can
choose whether or not to do the social side. ‘You can choose to be on the committee or on
selection committee or doing morning teas or you cannot, you don’t have to. So I guess that’s an
environment where there is lots of different roles for people at different levels, with different
levels of desire to interact.
Friends
Louise described few friendships. ‘I lost a lot of my school friends through not being able to
commit to things and keep those commitments basically and being an introvert. I don’t seek new
friendships, so it’s rare that they happen, but I do go with them if they do occur. I try to value
them if they do occur because I know they can help.
Louise could describe her ideas about the essence of a good friend.
‘A good friend is someone who allows me… who supports me… in being myself and doesn’t put
demands on me. If there was a social event and at the last minute I couldn’t come because I
didn’t feel well enough or something like that, being understanding of that. Which, I’ve found
actually to be really difficult personally. Someone, who can converse with me about the things
that I want to talk about. Maybe a common thread or something in common that draws us
together. So it’s something, you know that you know that you’ve always got.’
Neighbours
Louse has had very limited contact with neighbours. She thinks a good neighbour ‘is somebody
that doesn’t encroach on my privacy within my home, but you know, I am still happy to wave and
say hi’.
‘What I want a good neighbour to do is to keep an eye out for anything suspicious because I
guess I would do that for them too. Not complain about my dogs barking — no one ever has. So,
you know, keep to themselves mostly. So I guess somebody who doesn’t knock on the door
frequently but does keep a general eye out in the street and what’s happening and at people’s
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houses. Not a nosey neighbour so to speak and I guess alert me if there was anything they felt I
should know.’
Louise also outlined how she would act as a good neighbour and that it was similar to what she
wanted from a neighbour.
‘If I am a good neighbour I guess I would act in the same way as how I see a good neighbor. If I
saw something weird happening at the house, then I may alert the neighbour or if it’s something
that perhaps needed the police or something like that, to act in those circumstances, but also, not
being on their door step, not knocking you know for no particular reason. By just allowing them
privacy in their own home….so probably the same things that I would want.’
Community setting: Gym
Louise described her involvement with a gym where there is a group of people all pursing their
individual and common goal to train. ‘I do go to a particular gym with my partner and everyone
there , it’s a male and female gym but everyone’s got a common goal, everyone is there to train.’
Louise reflects that there must be other social and group situations that people would outwardly
think is not necessarily suitable for an introvert but do offer that kind of level of limited
interaction. The gym that I go to everybody is very focused on their training and may only say a
couple of sentences to each other if they know each other really well. So it’s an environment
where I can be for a few hours and I feel supported in that environment because there’s not an
expectation on any social interaction. I mean it is interaction but not verbally. It’s when I have to
develop ongoing relationships with people that sometimes I find it quite difficult’.
Louise did note that her partner is a backstop for her if she does need to ask about an exercise or
piece of equipment and ‘I don’t want to ask somebody I don’t know.’ This setting is right for her,
where there are no expectations from others, unlike other more social gyms where people go for
coffee or socialise.
She is becoming more confident ‘because I know exactly what my program is and I can move
through it at a pace that suits me, which everyone else is doing pretty much the same thing as
well’. ‘Now I’m oblivious because I’m focused on what I’m doing and I realise other people are
actually focused on what they are doing.’
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Acquaintances and brief greetings
Louise described how regular routines, like shopping, could mean she felt part of the community
without having to interact a lot. ‘Another example of that is maybe going shopping, because
you’re still out and in the community. There are people around, you have a bit of interaction
with the shop keepers and that sort of thing but again then you are choosing the level that suits
you at that time.’
‘And when I’ve been particularly unwell I haven’t been able to do those things.’
Self help/ support group
Louise has just joined the support group and was appreciating being accepted and being with
people with a common interest. ‘The only group I am a member of is the Consumer Advisory
Group (CAG) at the moment, and so we all have a common interest and a common goal, and
everybody brings something different within the group that’s valuable.’
‘I’m in a process at the moment where the CAG is such a hugely positive experience for me….I
feel valued and respected in this environment but I don’t feel that in the workplace. Because it is
such an incredible fulfilling, respectful environment where I feel really valued and I don’t think
that I’ve been in my whole life in an environment where I’ve felt respect and you know feeling so
valued. It’s an incredible experience. Nothing compares, longevity in the group would be good,
which may happen anyway I might not have to wave a magic wand anyway.’
Businesses
Being a regular at a business offers opportunities for limited and regular social interactions.
‘There is one girl that works on the counter, and every time she sees me she’s like “Hi Louise,
how are you” and we have a very brief conversation and that’s, so that’s built up over time.’
Pets as companions
Louise’s pets are most important for her for companionship. ‘I’ve got my dogs, they would be in
the inner circle of social relationships.’
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SUMMING UP LOUISE’S EXPERIENCES
 People can feel included in settings where people share a common goal, but
don’t necessarily interact at any deep level.
 Despite being little in contact with neighbours there can be a connection
through expectations to notice the unexpected or unwanted, while maintaining
privacy.
 Not everyone likes groups or in depth social interaction. ‘You don’t have to
develop relationships with people, that require maintaining or ongoing support, and I
can choose the level of interaction but I am still socially included.’
 Many groups based on common interests present options for how much social
interaction people want.
 It’s possible to feel supported but not through talking — sharing a common
experience.
 Pets can be important as companions.
 Early experiences are important for later life interests and pastimes.
d. Frank’s family
Frank is a young man living with his extended family. He loves dogs and finds relationships with
people more difficult, probably due to autism. His family built on Frank’s interest in animals as
the basis for establishing social relationships. The family had a clear plan and vision: they
gathered lots of information, knew what they wanted, and then planned how. Family started with
premise that ‘Frank will have a social life’.
His family said further to ‘treat him as normally as he is able to be treated. Don’t treat him with
kid gloves. You’ve got autism, you’re not allowed to do this, you’re not allowed to do that — get
out and do it, if you can’t do it that’s fine’. This meant trying some things and if they didn’t all
work out — ‘so change things.’ Always there was the proximity to animals which mattered. ‘He
used to go to riding for the disabled but that got too stressful for him so he now does carriage
driving.’ ‘Our idea was that he just coped if he didn’t we took time out and started again.’ We
have ‘got to keep on going, got to give him something that is not the same every day. We
wouldn’t like the same thing every day so why would he?’
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We wanted him to be accepted in the normal community. ‘Being in the normal community was
as much as we wanted.’ This meant we chose mainstream not special school.
Frank wanted to be beside others — ‘parallel player, happy to be by himself as long as he can
contact someone.’ ‘He didn’t want to be with other people who have disabilities’.
The family always talked about possibilities and realise that ‘impatience can be self motivating..
especially when the ‘system’ is slow.’
This direction has taken a lot of family time. ‘Lucky we’re retired and have time.’
Family
The family has always been ‘very community focused’. This included input to the school in the
past with the tuck shop and other volunteering. Family member: ‘Wherever Frank was I became
part of the system’. ‘Any problems they (the school) could come straight to me and tell me what
was going on…able to nip things in the bud’.
Family has a role in social outings. ‘It’s grandfather’s job to take him to the pictures.’
Developing Frank’s independence is part of thinking about the future, ‘we have accepted that we
have to look after him but we are slowly working towards his own home. He can be on his own
overnight now.. we can get away.’
‘I used to ring him and say don’t catch the bus home. Meet me at the supermarket complex. A
massive thing — the independence of it. A lot of the thing is to accept his disability. I see that a
lot. One mother, she accepted her young man with autism but oh my god totally molly coddled
him.’
Family’s friends
Family members are ‘out and about’ in local community and continue to do that with Frank.
‘People who know him are the people we see regularly. He knows them because we do. He
knows mostly older people.’
Friends
Frank attended mainstream primary and secondary schools. Frank’s mainstream school
emphasised its pastoral care program. ‘Secondary school was very important — support system
they put in place. When things came up he would go to counselling.’ Mainstream school ‘set up
the networks for Frank.’ Frank still has friends he first met from school.
‘Kids he went to school with remember him and greet him. He doesn’t remember anyone unless
they have a dog. He will remember the dog and associate the dog with the person.’
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‘He has one friend from school — his one and only normal friend. Friend keeps in contact —
takes him to the movies (3 or4 times a year), sends texts. James has his license and drops Frank
home afterwards. James doesn’t realise just how much he does. For his 21st — James brought 2
tickets to the Zoo one for Frank and one for James. They went down on the train, caught the
tram and went to the zoo. It was the best birthday present Frank had.’
Frank met Steve when Steve was a volunteer buddy. Now they are friends. ‘Frank has a friend
who is a vet. He met Steve through another community volunteer matching organisation. He had
one weekend a month and that’s how that friendship started. Steve moved away and got a
partner. Every time he comes back here he takes Frank out for the day. Steve kept in touch
when he went to Scotland for a couple of years.’
Social media and technology
Frank uses ‘text and Facebook — to keep in touch’ with friends. ‘A movie will come out that
Frank wants to see and Frank will text James saying ‘can we go to the pictures?’
‘Sometimes I’m bored but not often. If I am I have TV or play station games time in room.
Lonely on the odd occasion but plenty of friends so doesn’t get to me. Pick up the phone if I need
to. I always have the phone either on it or texting.’
Frank uses various media to keep in touch and to send and receive messages:

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Text: ‘I text to make him feel that someone is thinking of him.’ ‘Friends will send a text
— what are you doing Frank? ‘Text important to keep in touch. If something happens he
will send a video or a picture all on the text’. ‘Frank has all the staff mobiles and sends
them texts regularly’.
Skype: ‘He can Skype, talk to us and see us when we are away.’
Facebook. ‘Uses Facebook. Try and protect from Facebook predators — no picture/ has
a dog instead.’
Phone. ‘Frank’s phone is his world. Without a phone he is just lost.’
Tweet: ‘He can tweet.’
Neighbours
Neighbours ‘will look out for Frank’. The family continues to invest in the local area.
‘We have very good neighbours — the neighbour will leave a message if I am not around. Yes
there are people who would notice if he was not around. There is a very good neighbour who
would notice. If neighbours notice that Frank is not around, they will ask after him. There are
also plenty of people who would help out if we want to do something or go somewhere.’
‘If needed the neighbours will drop in and see Frank or send him a message’.
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‘He is in contact with the neighbours via text. He will feed the neighbour’s dogs if this needed
doing’.
Community group
Building on Frank’s love of animals, the family thought about how Frank could be involved with
animals and how and where this could happen. The family identified an animal welfare
organisation as the foundation for getting Frank to be socially involved. Frank doesn’t belong to
any other organisations or groups.
The community group is welcoming with high expectation of behaviour for Frank and everyone.
They are ‘prepared to follow through and be consistent’. The community group has a
‘commitment to long term relationships’. The community group has expectations of members
contributing by ‘being part of presentations, conferences, - contribution is built in’.
Frank goes to the animal welfare organisation three days per week. ‘People out there are more
his age — the young workers.’
Acquaintances
Acquaintances are the people Frank meets because he is out and about in the community. ‘He
sees a lot people, if he goes up to the supermarket complex, they say hi. I say who’s that and he
says, I don’t know they must be from school.’
Businesses
The family doesn’t have a corner shop but do use the local shops. ‘They treat him well in the
computer shops; (family member) thanks people for assisting Frank.’
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SUMMING UP FRANK’S EXPERIENCES
 The whole family is involved in the local community.
 Family always working to the long term goal of Frank being accepted in the
community, and as independent as possible.
 School is where lots of relationships and expectations started from.
 Find what you like to do, then look to who else might be interested too.
 When people know you, they look out for you.
 Being as independent as possible can help to be socially connected.
 Linking in with community groups and local neighbourhood takes time.
 Building social relationships can take a lot of time — family time too.
 Community group was welcoming.
 Try things — you can always change them.
 Frank’s definition of being connected is being in parallel to people, as long as
there is someone to contact if needed, and animals.
 Frank has one interest and everything flows from that.
 Relationships change and for Frank this meant someone who was a volunteer
buddy became a friend.
2.3 Joining and being part of the community
The following discussions describe people’s experiences planning to and becoming part of
specific community settings. The discussions reveal how different people want different things
from being with others and how circumstances change and evolve. For several people they have
initiated their involvement with community groups without staff assistance.
a. Anthony and finding the right club
Anthony wanted to join a club. He had played tennis and badminton since childhood. He had
specific reasons for choosing the badminton group.
‘I was looking for some physical exercise but nothing too strenuous. I knew the people at the
community centre who were playing badminton. It was not a badminton club where I did not
know anyone.’
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He planned his first night of badminton by going with someone he knew already.
‘I met with one of the people from the community centre to go to badminton club the first night.
I played a game that night. I had played badminton at school so I was not unfamiliar with the
game and I felt confident about joining the club because I knew about badminton.’
Anthony enjoyed the club at the beginning. It was a ‘good fit’ for him.
‘It started as a good fit with the club. It occupied the time and I concentrated on playing
badminton and enjoying the activity. I got along fine with the other club members. There were a
lot of people there who were younger than me and it was mixed men and women. They were a
diverse group’.
Club members were welcoming.
‘I was treated in a respectful way by other members. I didn’t feel excluded. There were no signs
of exclusion or barriers that I had to get over. It was a stress free environment for quite a while.
Nobody told you what to do.’
The aim was to play badminton — not to socialise.
‘It was not a social group, the focus was on badminton. There was no time for socialising; it
was just into badminton and playing. People usually went home straight after the games. The
hall was cold and people didn’t want to stay, especially on winter evenings. It was ‘bring your
own drinks’ — I always took my own drink.’
Expansion of badminton
Anthony started to talk about badminton at the community centre. People at the community
centre started to show an interest in playing too.
‘Badminton became a topic of conversation at the community centre — the social conversations
at community centre were about badminton. I would get tips and coaching for playing
badminton at the community centre. The badminton club helped to develop connections at the
community centre. It became such an activity and the community centre borrowed a table so
that people could practice while at community centre.
Anthony became a bit frustrated with how well he could play compared with others.
‘The nature of badminton is competitive and I started taking on this competition. All players
were graded into different levels. When you first joined you were at the base level. You were
promoted if successful to another level. Other people I knew from community centre progressed
and I got stuck at a level. I played for three years but my skill level did not progress. I felt
frustrated when other people from community centre did better than I was doing.’
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Things started to change
Anthony gradually realised he wasn’t interested in a competitive club. ‘It was a very individual
group — everybody was trying to win. You had the opportunity to play in a team and you
brought your skills to the team. The teams were random and the club did the matching. You
played with strangers and there was no social connection between the players.’
He wanted other things. ‘I didn’t want the competiveness of the game. What I wanted was the
benefit of physical activity, fun and enjoyment.’
Anthony resigned, having realised the club wasn’t for him. ‘I told the people who were officially
in charge that I was resigning. They were fine with that’.
Anthony then started playing badminton in a group which was more social. This suited him
much more.
‘I had social connections only with people I already knew from community centre. We formed
our own social group within badminton. Others did the same. It was a venue only for people to
play badminton’.
Anthony learned for next time. ‘I learnt from that experience. If I ever joined another sporting
group I would find one that was not so competitive. I would try to find a group where
competition was not the entire aspect.’… ‘At the badminton club I was just another player — pay
your fees and use the facilities. Badminton gave the community centre members something to
talk about outside community centre.’
SUMMING UP ANTHONY’S EXPERIENCES
 Feeling connected with others can come from pursuing a common interest.
 People want different things from clubs and groups. Anthony realised he
wanted to socialise.
 Not everyone wants to socialise rather than be competitive.
 It’s Ok to change groups — things change.
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b. Amanda joining the school council
Amanda wanted to be more involved in the school community. She decided to apply to join the
school council. ‘I wanted a way to be involved with the school community. It was a chance to
meet other parents and to help out. There was an advertisement about the vacancy in the school
newsletter.’
As well as the advertisement in the newsletter, Amanda asked several people about the school
council.
‘I asked a couple of people about the schools council. These were friends of my parents, who I
also know, who had kids at the school. They had had kids at the school for a number of years so
were well placed to tell me about the school.’
‘I spoke to the principal about the school council. He thought the council would benefit from the
skills I had. The council was also desperate for people. I did a bit of research on the Council
and filled in the application.’
Being appointed and getting started
Amanda read she was on the school council in the newsletter. ‘I found out that I was on the
school council when I read it in the newsletter.’
She didn’t have much preparation, although people were welcoming at the meeting and
acknowledged the skills she brought to the role.
‘The date for the first meeting was set. I turned up at the school and introduced myself at the
meeting. The meeting was informal and I was introduced as the new member. A note was made
in the minutes welcoming me to the meeting. The other members said polite hellos and
commented that it was good to have someone of my caliber on the school board.’
Was it a good fit for you?
The school council role suits Amanda in several ways. She is both contributing and enjoying
what she is gaining from the role. Amanda has contributed skills from her previous work roles.
‘The skills that I brought to the council have come from running my own businesses, managing
offices, environmental planning.’ That helped build her confidence in participating and
contributing.
‘I have been able to help them out when they are looking at quotes. I will say no that is too high.
They are quoting this because you are receiving government funding and they think this is what
you can pay. I say tell them you will accept a lesser amount. I have also assisted using my
computer skills.’
There is a limited expectation of socialising but still there are opportunities for adult discussions
which is important for Amanda.
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‘People do not generally stay to chat after the meeting. They are night meetings and most people
want to get back home to their families. For me it is good to get out without my child and have
adult conversations’.
Amanda is also learning about how schools operate and their funding. ‘I have been on council
for one year. I find it interesting to hear the background information on what is happening in
schools e.g. the low levels of funding schools receive’.
Everyone shares a strong commitment to the school. ‘What I like is that everybody is there for
the good of the school. At times there are very heated discussions and I am able to have my say.
The discussions always wind up with everyone is there for the good of the school.’
The meetings are interesting for Amanda.
‘I like hearing about the things the school is planning to do and being a part of the solution. I
like to hear the results of our discussion and that people are happy with the outcome. I haven’t
been bored so far. If nothing happens it may be a possibility.’
Amanda has a sense of achievement in the work completed by the school council.
‘There is so much work to be done. It will be nice to look back in seven years time and say “We
have achieved something”. A sense of achievement is what I get from belonging to School
Council.’
She has contributed in other ways too.
‘Over the school holidays I spent 2 days working on tidying up the school yard. This saved a
couple of 100 dollars that can now be put towards purchasing something for the school. School
is thankful to get help.’
Amanda also has a plan about what to do if the school council is unsatisfactory in some way.
‘If I was unhappy with the way things were being done or felt unheard, I would raise it with the
chair. If it was coming from the teachers I would raise it with the principal. If the issue was not
sufficiently resolved, I would walk away.’
Benefits of being on school council
Amanda feels the teachers respect her and will ask her opinion, and that she has access to more
information about the school.
‘School council gives you access to teachers and programs. You get more respect from the
teachers and this flows on to the way that your child is treated. It makes me feel more part of the
school community.
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‘Teachers will stop and have a chat with me and ask my opinion. I have been asked to do
presentations in my skill area.’
Parents are recognised and thanked for their input.
‘The parents are always thanked for making the time available to attend the meeting. At the end
of the year the school puts on a Christmas party for school council. School council does the
same for the teachers.’
Amanda has the opportunity to recognise the teachers too.
‘I always reiterate how good the teachers are. Always minute that the principal has been asked
to pass on thanks from school council. School camp — teachers went against the industrial
action to make sure that the kids got a camp. We made sure that the principal passed on our
thanks to the teachers.’
The school council has assisted Amanda’s recovery.
‘Being on school council has been a really good stepping stone in my recovery. It helps to be an
environment that is similar to those that I spent a huge part of my working life in. It helped me
to get back on my feet again.’
SUMMING UP AMANDA’S EXPERIENCES
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Finding a group or committee which used Amanda’s skills was important.
Amanda contributed and gained from participating in the school council.
School council members and teachers recognised her contributions.
Making a contribution improved Amanda’s confidence and well being — and
she was an asset to the School Council.
c. How Esther found out about what’s on locally
Esther is a member of many groups: an art group, Pilates, Carers groups, CWA knitting
association, church groups and discussion groups at the community house. She has tried and
learned other things along the way, such book binding. ‘There are always other groups
around….’
Esther described how she felt joining a new group or situation:
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‘I do feel self conscious when I first join a group. But it gets me out of the house, less of a recluse
— means I’m able to talk with people.’
Esther has also found that sometimes she doesn’t want to socialise — and that’s Ok. ‘Sometimes
you can’t be social because of the voices and the meds.’
Esther found out about different group from others.
‘A friend who is very much of the community told us about the carer group and told us about the
knitting group.’
She knew the following artist and was interested in art and sculpture:
‘There was a local artist who got a community grant to build a meditation garden. Artist had an
idea of getting the community to make mosaic pieces. Sarah and I were involved with groups
creating mosaics.’
This was a short term project.
Esther’s mother went to CWA knitting first…’then the woman who runs the CWA was where we
went to buy wool. She asked us to join’.
Esther has contributed her skills.
I did classes up at the high school. Part of CWA group that taught students to knit. I know craft
things, drawing techniques. I brought this to the group. I learnt to use an embroidery machine. I
was after skills. I have been part of the woollen show — did a bit of crochet in the past. I made
20 dolls to go to East Timor.’
Esther has found that being in a smaller rural community is better for getting to know people. ‘I
was used to different things in Melbourne but it’s not as good as being in this small town. You
get to see people regularly in the country. In Melbourne you have to travel a lot to do things’.
Esther enjoys the U3A movie group. She has found that people from the movie group also say
hello down the street. ‘People pass by in the street and have a chat. I had a chat the other day to
one person.’
Esther also used to be able to sing. Ideas for singing were in the local paper and on community
notice boards. She found a singing group and ‘I didn’t know anyone… they were friendly, talked
and chatted. Provided cuppa and break, very friendly.’
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WHAT ESTHER’S EXPERIENCE TELLS US
 There are lots of activities and groups in each community.
 Find what you are interested in.
 It’s possible to find out what’s on from other people, notice boards and the
local paper.
 Not everything is long term. Be part of what suits.
 Being in a small community has meant seeing the same people in different
places: this can make it easier to get to know people… and there is less travel
between things.
 Some communities and some groups do know how to welcome new people
better than others do.
d. George pursues his interest in chess
George had ‘played billiards for years and was a bit sick of it.’ One of his friends said: ‘I think
you are smart — you should take up chess’. George decided to take up chess and saw a
community notice board outlining costs for lessons preparatory to joining the club. George found
out that some people have lessons and decide ‘it’s not for them. Others join as a social member
(play with friends) and some go in the competition’.
George knew what he wanted and what he enjoyed. ‘Activity was the aim. To enjoy the activity
similar to other games I have played in past….I like games where you have tricks and bid. You
must be able to concentrate. Occupies your mind gives you something to look forward to.’
George has made friends as well.
‘A few of chess party friends are my friends and we catch up sometimes. People are happy to
play with you. They know you are going to make mistakes but will take you on board. Doesn’t
matter if you lose 10 times in a row they know you will improve. I knew some of the people, not
many.’
George is now a member of the chess club and plays in competitions with a partner.
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‘I asked a lady if she wanted to be my partner, she said yes and we still play together in
competition. I thought she would be a really good chess player. She is my partner on Tuesday
and Fridays. She is a really good chess player. I am a pretty good chess player too.’
There are competitions throughout the week and it’s essential to have a partner to play
competition. The club finds a partner if people are alone. George also noted it’s important to be
a reliable partner. It’s important to be a courteous, nice, engaging person. Chess is challenging
and people can disagree. In chess it’s important to ‘manage conflict by talking it out. Try not to
get cross. Sometimes I do get a bit cross but try to stay calm and talk things out’.
WHAT GEORGE’S EXPERIENCE TELL US
 Other people sometimes recognise what you are good at. This helps find a
new activity.
 George knew what he wanted from a group.
 Some clubs help people find a partner to be able to participate.
 George understands the importance of him contributing to the chess
partnership by being reliable.
 Being part of a group, with other people, can mean having to manage
disagreements and talk things through.
e. Lisa presenting information to community groups
Lisa has created a role for herself presenting information to schools and clubs about her
experience with disability. Lisa has developed fliers and a power point presentation for school
groups to talk about her accident and how it has affected her. This was ‘scary’ at first but she
soon found out that ‘people were supportive of her’.
Lisa has also approached local sporting clubs about the talk. She gave the talk about her accident
and what happens afterwards to netball clubs. Lisa said her message was: ‘don’t drink and drive
and end up like me.’ She has also spoken at conferences and gave a ‘talk to the church in
disability week.
Lisa’s mother said Lisa is confident now when she goes out. She has become a competent
presenter. ‘I have never seen her hesitate or scared. We have the computer there and Lisa goes
sentence by sentence. She ad libs a bit — good sense of humour - that breaks the ice a bit’.
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Lisa recognises that her sense of humour is an asset and it always comes through and she always
gives good answers. Humour is needed to relax the audience. People sometimes get frightened
if it is someone with a disability bit wary about how to handle him/how to say things. Once Lisa
cracks a few jokes with them they are ok’.
Lisa found that when she spoke about her epilepsy at the adolescents’ camp, one of the kids stood
up and said I have epilepsy too. One of the staff spoke to Paul afterwards and said — Gee Lisa
you did a great thing. We knew that he had epilepsy but he did not want any of his peers to
know. Because Lisa made a bit of fun of it and explained it all, the boy had the courage to get up
in front of all his peers and say I have got it too.’
Lisa and her mum have learned ways to respond if things don’t go smoothly.’ If anything goes
wrong at a talk we always laugh it off. We bring our own computer equipment so prevent
computer glitches. Lisa has her own mic — she is a bit hard to understand so has a lapel mic’.
WHAT LISA’S EXPERIENCE TELLS US
 Lisa created a role for herself with community groups.
 Lisa has many skills and has learned more through being a presenter.
 A sense of humour can often get though situations when people are anxious
or when little organisational things don’t quite work.
 Other people recognise what Lisa is good at — not her disability.
 Lisa has been a role model for others giving them confidence to speak up.
f. From self help group to community group
The Consumer Advisory Group members meet together for mutual support, information and
social opportunities and relationships. This occurred during several group discussions. Several
members talked about how the self help group was a ‘stepping stone’ to the wider community.
Members provided their insights and experiences about joining a community group using the self
help group as a foundation to get started and become more confident and knowledgeable.
The following lists are each a brainstorm of the responses to the different questions. There is no
one answer! Different people have different ideas.
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What do you contribute to a community group?
Some people responded to this question by listing a range if different skills relevant to different
groups, such as:
‘Composition skills, knowledge of mapping topography; artistic ability; cards; music festival:
mosaic tiling stepping stones.’
Other people identified a role that was important for them and then all of the opportunities that
developed from that:
‘Artist: Life drawing group: other artists and gallery. Exhibitions, Artwrap (continuing ed),
build a folio, social event. Drawing classes’.
Community educator: ‘Mental health education in schools/ council/ community forums and
talks’.
Some people had specific roles within their community groups, such as;
‘Captain of sporting team.’
‘Time keeper, secretary.’
Finding out about what’s on in the community
People identified a range of ways to find out more about what was in the community.
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‘Invited by friends to join.
Use the internet to search for supports/groups — Google questions e.g. “information for
people with mental illness who want to work”.
Browse at the library to see what is available.
Check the local newspaper.
Talk to friends who have similar interests.
Check the information board at community houses.
Use the contact number for the group to find out more information if the person has the
confidence and capability to do this.
The case manager can get information.’
Generally people sought advice and information from friends, contacts, internet and other
support group members. Only one comment specifically mentioned a staff role. There was
discussion about how it is important to have ‘a person you can trust to run suggestions by. This
person could make the phone call for you or they could be there while you make the phone call.’
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How can you tell if it is a match for you?
Group members listed many ways to check if the group or activity was the right match for them,
such as going along with someone else, being spoken to respectfully, or how flexible the
arrangements could be.
Important preparation:
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Make sure that you have the skills to go to the group — what is the skill needed and how do
you get it. e.g. before joining a chess group take lessons.
Find out what the group needs from you.
You make a decision to commit to the group and about the level of commitment that you can
make to the group.
Find out about the group requirements — bring a plate of food, fees.
Skills and equipment— you need to know what to take.
Mentally prepare for the group— relax, think about what you might expect at the group.
Positive and welcoming signs were:
 Someone could come with you to check that the group is what you want.
 Group members talk to you.
 Group members speak in a respectful way to you.
 The group leader lets you in the front door and welcomes you to the group.
 Members of the group, other than the leader, talk to you.
 Proper introduction/induction process to the group.
 People take an interest in you and ask questions about yourself and your family.
 People don’t ask too many questions and don’t take too much of an interest.
 Friendly interest rather than sticky beak interest.
 Easier to not feel overwhelmed in small groups.
 If the group is flexible — it’s ok not to attend every week.
 Comfort, feel relaxed, you enjoy the group.
 Not in fight or flight mode.
 Body language, eye contact, nod or smile, encouragement.
Worrying signs suggesting the group was not a good match were:
 ‘People asking too many personal questions. Offer less information about themselves and
focus on you. Prying questions.
 Depends on how well you are — if you are still experiencing paranoia you may make
assumptions. Group may not suit you at the time but further down the track may be fine.
 Sometimes the group is too far away and this is an added stressor.
 The timing of the group may not be right for you.
 Purpose of the group may be different to yours.
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Very busy environment/too much stimulation.
Perception — the environment feels threatening.’
What do you do when it is not working for you?
People suggested practical ways to respond if a group may not be the right one for each person,
such as getting feedback from others and checking your reactions.
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Take someone you trust along with you and who can give feedback on what the situation is
really like.
Get someone else’s opinion about what is really going on/sounding board.
Important that the person makes the decision themselves that they want to go.
Be ok about being yourself.
Attended one group — given lots of instructions and told “you must come every week” so
decided not to return.
SUMMING UP ABOUT JOINING A GROUP
 Prepare before joining a group or club.
 Think about what you bring to a group.
 Look around the community for a match between your interest and abilities
and a group.
 Recognise there will be ups and downs in group membership.
 Feeling welcome and respected in the group matters.
 Think about what to do if the group doesn’t work for.
2.4 Aiming to be inclusive: the perspective of one community
organisation
This interview explored with a church warden how the church aimed to be inclusive of all
members of the community. The church has planned ways to encourage people to feel welcome.
The church knows there are people who attend church who require support to participate. These
are ‘mainly people with mental illness, particularly people with addictions, drug, gambling,
alcohol addictions. There are also older people with other disabilities, such as those who have
had strokes. There is a young person with down syndrome, people come and go a lot, I think, so
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every so often you see young people in wheel chairs or something like that but not as a regular
thing.’
How are new people welcomed
Culture of the church: The church has ‘an atmosphere of welcome’ ... and I’ve since found out
that people who are in leadership in the church actually make quite an issue of this that it is your
job to make its everyone’s job to make people who come feel welcome and that applies as much
to someone who might appear different or, poorer as to anyone.’ ‘This one stood out for that sort
of culture.’
How people are greeted: ‘The first thing is someone greets you as you come in. But the other
thing is if someone hasn’t been before and obviously doesn’t know anyone it’s the job of the
hosts for the day to make sure that they’re introduced to some people and that those people look
after them and make sure they are comfortable’.
Church members do a range of things so that people feel welcome and not alone.
They introduce themselves, and have a little chat e.g. are you having a good week or that sort of
thing, then make sure they have got someone to sit with during the service or they say do you
know anyone here , it’s a reasonably big church so chances are they will know someone. So they
will make an effort to find them. If they have children they will explain to them about how the
Sunday school system works and if they want their children to go they are welcome to do that or
welcome for their children to be in the meeting. It’s entirely up to the parents if they want their
children to go to Sunday school or the meeting.’
Different people have different responses to being welcomed. Being flexible is important.
‘I think, you have to be careful about being so welcoming and so inclusive, if you are an
introvert like I am. The first time I went there were about three or four different groups of people
that officially welcomed me. That that wasn’t counting the ones that smiled.’
Being too welcoming can be overwhelming for some….’so you do have to be able to give people
space too … not overloading people by being too welcoming I guess.’
It’s important to be aware of others feeling and reactions. Things like: ‘being very gentle with
people, speaking softly, maintaining you know a sensible distance from them, making sure
people are comfortable and not pushed into more physical contact — like a hug.
Host teams are responsible for making people feel welcome that day. Host teams find out who is
new, make introductions, find out where people prefer to sit, who with and provide information
— even umbrellas.
‘If it’s raining you co-opt the little kids to take umbrellas out to the car park so that people
getting out of cars don’t get wet. Kids love that.’
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How else are people included
The church has a range of ways to involve people beyond weekly meetings. There are other
groups which people become part of.
‘One of the important things … more important than the Sunday meetings is mid week house
group meetings. The ultimate aim is that they become groups within a group and they are the
kind of ministry area.’
These meetings encourage people to attend and recognise people vary in how they are feeling or
they have other commitments ... ‘and there is this really relaxed kind of atmosphere about it, you
do what’s comfortable for you at this time. I see some of them from time to time wander in and
wander out again.
It’s really important not to pressure people. ‘Yes expecting behaviour change when you are not
going to get it because what people need is friendship not changes.’
‘The church has to be careful not to think it can heal everyone.’ This is different from being a
friend…‘If you’re a friend and just a friend, then you’re not trying to change their life you’re
just going to support them in where they are at.’
After meetings there is an opportunity to get together. ‘I’m rarely home before 7pm because
people won’t leave. It is a really good sign of a very healthy culture and you see the people that I
know of that have mental health issues there. It’s set out like a café so there are tables and they
will be sitting at tables with other people just being a part of things.’
It’s not just people who are friends who spend time together. ‘It doesn’t look like friendship
groups it looks like people have been sitting at a table and someone comes and joins them and
they just chat.’
Transport is provided. ‘The bus goes all over town and takes them home after the cuppa and they
get home quite late’. ‘I’ve seen them coming in off the bus and they’ll be chatting.’
What happens beyond the church
Some people have friendships outside the church. ‘There’s a real encouragement of other people
to keep up friendships outside of the church, for their own sake not for the sake of the church or
anything’.
This is encouraged by making such contact acceptable, including when people have left the
church for whatever reason. ‘Oh you’re still seeing so and so how are they going. It’s ok, you
don’t feel any unease.’
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REFLECTIONS ON BEING WELCOMING AND INCLUSIVE
 Leadership matters — leaders create a direction and support a culture of
inclusiveness — or not.
 Have practical ways to welcome people who are new to, and part of, a group,
such as transport, chance for a cuppa, or people who greet and look out for
newcomers.
 Recognise that different approaches are important for different people — and
that people may vary their involvement.
 Invitations to be included shouldn’t put pressure on people.
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PART THREE: STAFF
DEVELOPMENT MATERIALS
3. 1 About these resource materials
These materials are for staff members or teams who are supporting people with disabilities,
including disabilities arising from mental illness.
The materials are for staff training and development activities for staff to think about ways to
support people with disabilities to be more socially connected. The ideas are relevant for all staff
roles working with people with disabilities who are ready and want to become more socially
involved in their local community.
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The materials have been developed to be used in staff meetings, where time is short, to assist
staff in various community support settings to explore:
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What are natural supports?
Why natural supports are important
The role of staff enabling, and not preventing, natural supports forming.
There are nine topics which are related. It is not intended that the material will be worked
through sequentially or in total. Choose the topics and activities which are relevant to you.
1.
2.
3.
4.
5.
6.
7.
8.
9.
Being socially connected is important
What sorts of relationships?
Step 1: what sort of a life does each person want?
Being in the right place, at the right time for natural supports
It’s not a simple as it sounds!
Where is the directory of natural supports? There isn’t one.
Partnerships with individuals, families and staff — what does it take?
Can staff be friends? Are staff natural supports?
Summary do’s and don’ts
Each topic is structured as follows:
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Aim for this topic
What is this topic about?
What is your opinion?
Want more ideas?
a. How these materials were developed
We asked people who each judged themselves to be socially well connected to talk about their
experiences.
b. Using the materials
Choose a topic that is relevant to you or your staff team. Read through the aim and what the topic
is about. Base discussion around this material to clarify what it means to everyone. Select one
activity (or more) from the ‘what is your opinion?’ section and encourage discussion.
A discussion leader could help to ensure all the information makes sense to everyone and what’s
important for them. For some topics suggested issues to be covered have also been provided. A
good starting point is to make sure everyone has the same understanding of key terms and
phrases.
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Just a note: Topic 4 has a lot of detail about the different approaches which have been used by
organisations to build natural supports. Lots of different ways have been tried! Different
approaches work best in different situations.
The materials in Part 3 parallel information in Part 4 for individuals and their families. In
practice, Parts 3 and 4 can be used as relevant from any perspective. Often excerpts from the
interviews from Part 2 form the discussion material. It may also be useful to read more of the
interviews.
In addition, there are supporting posters and tip sheets to promote ideas and discussions. These
are described in Part 6. Some topics specifically refer to some posters and tip sheets, but they
may also be useful more generally.
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Topic 1: Being socially connected is
important
1.1 Aim for this topic
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To describe how being socially connected is necessary for everyone’s well being and
quality of life.
1.2 What is this topic about?
a. The importance of social relationships
Many people with disabilities, including psychiatric disabilities are socially isolated.
‘Most disabled people continue to be isolated, lonely and have few
friends.’ (Shakespeare, 2003)
‘Most people with developmental disabilities dependent on the service system
have very limited social networks and few friends.’ (Amado 1993)
‘Engagement in friendship is not necessarily easy or straight
forward for ... people with mental illness… due to their capacity for
social connection… and ongoing social stigma… by which they
experience social exclusion.’ (Montclaire 2011)
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Natural supports are important for physical and mental health and well being.
‘Social connection is increasingly recognised for its important role in mental, emotional and
physical health. Interpersonal relationships are the foundation stones for building social capital
and stronger communities. The value of friendship seems simple and obvious. It is a very intimate
aspect of life which is largely assumed to be integral and spontaneously generated, given a
modicum of opportunity. But engagement in friendship is not necessarily easy or straight forward
for... people with mental illness… due to their capacity for social connection… and ongoing social
stigma… by which they experience social exclusion.’ (Montclaire 2011)
Loneliness effects physical, mental health and human behaviour. Human services and
organisational practices can add to loneliness.
‘For the sake of people’s well-being, longevity, mental health and
positive social behaviour, practices in human services systems that
contribute to loneliness must be identified and altered.’ (Amado 1993)
‘A major criticism of community-based services is
the difficulties these programs have in enabling
people with disabilities to participate fully in
community life and connecting them with other
community members.’ (Traustadottir 1993)
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Natural supports can counter loneliness.
‘The quality and not just the quantity of social relationships affects the
feeling of loneliness; loneliness is unpleasant and not a good way to live life.
Even if a person is surrounded by support staff, case managers etc – they
could experience loneliness. People may be present in social situations but
not participating. Social participation is not friendship. People with low self
esteem, who find it hard to make friends, are likely to be the most lonely.
Loneliness affects human behaviour and physical and mental health
negatively.’ (Amado 1993)
Natural supports are inbuilt in participation and involvement in community and networks.
‘Communities and networks are important not just because they make people
feel happy and connected. Networks play a number of other functions as well
as emotional support: instrumental aid (lifts, childcare, loans, finding work),
appraisal (evaluating a problem or a solution), and monitoring.’ (Shakespeare
2006)
Natural supports can protect vulnerable people and ameliorate the likelihood of social exclusion.
‘People with a disability or mental illness are often seen as ‘less than’ or ‘different’
in society. They are at risk of being rejected, isolated and segregated and lead lives
outside the rest of society. What can best protect the vulnerability of people is the
very thing from which they are separated: ordinary citizens. For these people the
lifelong exercise of building, repairing and rebuilding a web of relationships in
which we all learn is denied to them.’ (Klees 2005)
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Different approaches have been tried to establish and maintain natural supports for people who
are socially isolated and lonely.
The aim is for ‘the person to have a richer set of experiences; to have a
life more familiar to others – who can talk and relate to the person (i.e.
have something in common); to have more chances to learn and be
familiar and comfortable in other typical settings; to be surrounded by
more people who may provide natural support; and so increase the
likelihood that relationships of various kinds will occur.’ (Klees 2005)
‘Social connection is increasingly recognised for its important role in mental,
emotional and physical health. Interpersonal relationships are the foundation
stones for building social capital and stronger communities. The value of
friendship seems simple and obvious. It is a very intimate aspect of life which is
largely assumed to be integral and spontaneously generated, given a modicum of
opportunity. But engagement in friendship is not necessarily easy or straight
forward for... people with mental illness… due to their capacity for social
connection… and ongoing social stigma… by which they experience social
exclusion.’ (Montclaire 2011)
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People’s ability and drive to seek out and maintain relationships with different people varies.
Some people will always ‘need a hand’, others may ‘need a hand’ sometimes.
‘Reciprocity seems to be an important element in proper friendship’
(Shakespeare 2006). ‘Contribution is important but sometimes we need a
hand….there are moments when we are not’ interdependent. We simply depend
and cannot reciprocate.’ (Kittay 1999 in Shakespeare)
b. Definitions of key terms
‘Natural supports’ is the term used in the title of this project to refer to a variety of social
connections and relationships which promote social inclusion. In these materials natural support
and social connections are often used interchangeably.
Social inclusion is having the opportunity to participate in learning, occupation, to engage with
others, and to have a voice (http://www.socialinclusion.gov.au/about/what-social-inclusion)
Natural supports can include family, friends, acquaintances, co-worker or neighbours and
members of organisations or groups, and more. That is, any situation where people get
together or chat, briefly or over time.
Natural (or informal) supports are different from support and assistance from people in paid
roles, (although people in paid roles may also be a source of natural support in some
circumstances). The core role for staff is to ‘Work with people to support and sustain their
existing resources, assets, networks and relationships’ (Department of Health 2011).
Natural supports can involve people with and without disabilities. A relationship involving
natural supports is a two way relationship. Each person brings something to the relationship and
is sustained in some way by the relationship.
For this project the emphasis was on natural supports who were not family members or staff.
c. Key messages from interviews
 Everyone needs to feel connected/to belong to something/to be a part of the community.
 People become mentally and physically unwell without it.
 People with disabilities can be a part of their community.
 Everybody’s different, there is no recipe. You can find your own ways to connect.
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Anyone with only staff and family in their life is missing out on other sorts of
relationships.
Staff and friends are different.
Being connected to your community is not all about friends.
Keeping going/look for other options-you can do it.
Relationships change/some are stressful or unsuccessful and that’s okay.
There are many different ways of being included.
1.3 What is your opinion?
a. Why are social relationships important for everyone?
Why should we be concerned when people with disabilities are socially isolated?
Is friendship always the goal?
See also: poster: Forming relationships
c. Complete the following and discuss your answers
True or false: why do social relationships matter?
True/False/
Maybe
It is the people in our lives who enrich our lives.
Not having enough people in your life can lead to poor mental and
physical health, loneliness and no one ‘looking out for you’.
Anyone with only staff and family in their life is missing out on other
sorts of relationships
Everyone can have a network of people in their lives
Discuss your answers. There are many viewpoints to explore.
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d. Have your discussions identified the following issues?
 The reasons why people agree or disagree with the different statements above.
 The range of meanings given to ‘friendship.’ For example, does friendship often refer to the
opposite of loneliness?
 Does everyone have a role supporting the development of social relationships?
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1.4 Want more ideas?
a. Does everyone give something to each relationship?
Is reciprocity always important in relationships? Can relationships tolerate periods of
dependency from one person and still survive? Discuss the following.
‘Reciprocity seems to be an important element in proper friendship.’ (Shakespeare; 2006)
‘while the image of mutuality and interdependence among persons is an important one…there
are moments when we are not’ inter’ dependent. We simply depend and cannot reciprocate.
Furthermore, while dependence is often socially constructed… all dependence is not’ (Kittay
1999 in Shakespeare.)
How do you understand reciprocity? Reciprocity doesn’t depend on being able to contribute
independently but it may depend on the ingenuity of staff or family to assist someone to
contribute. It is important to look carefully for the ways each person can contribute, like making
a cup of tea for someone else – even with full support. Being present at a meeting or a music
festival is another contribution when crowd numbers matter.
b. Policies which support building social relationships
Mental health policy and research recognises the importance of social relationships.
‘Core principle: Family, support people and significant others have a significant and important
role in supporting people’s recovery. Mental health service providers support people to utilise
and enhance their existing support networks. Good practice: Support people’s relationships and
social networks.’ (Framework for recovery oriented Practice 2011)
Victorian recovery oriented practice (2011) dept of health. For the purposes of this framework,
recovery-oriented practice is understood as encapsulating mental healthcare that:
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encourages self-determination and self-management of mental health and wellbeing
involves tailored, personalised and strengths-based care that is responsive to people’s unique
strengths, circumstances, needs and preferences
supports people to define their goals, wishes and aspirations
involves a holistic approach that addresses a range of factors that impact on people’s
wellbeing, such as housing, education and employment, and family and social relationships
supports people’s social inclusion, community participation and citizenship.
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Topic 2: What sorts of relationships?
2.1 Aim for this topic
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To recognise the range and variability of social relationships and sources of natural
support.
To recognise that are many different types of relationships — people with disabilities
tend to have too few.
To understand that for us all, most social relationships we have are not friendships.
2.2 What is this topic about?
a. Types of social relationships and natural supports
Here is a list of possible social relationships — and there may be more!
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Family, including extended family.
Friends.
Family’s friends.
Neighbours.
Acquaintances — places where person is a regular; people are recognised because of
frequently being part of a place, activity, pastime e.g. walking the dog along the beach
each day.
Members, staff or volunteers in community groups or organisations.
Colleagues at work or study.
Businesses where person is a patron or customer.
Social media and IT to stay in touch.
Social action groups with a common cause, such as self help/advocacy groups where
people meet for common interests and causes.
People you greet in public spaces such as sports grounds, the local streets, but perhaps
don’t see again or not very often.
Pets: Some people mention the importance of pets as companions and a bridge to meeting
others.
The relationship with staff is a complex one because it is a paid relationship and for many people
very important! See Topic 9 for more discussion.
b. What people want from relationships varies
People want different things from social relationships. Discuss what Louise has said:
‘And the gym is a great environment because it doesn’t have a lot of verbal conversation or
interaction but it is still being included’ (see Louise’s interview).
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Louise wants people side by side with her so she is not alone, but she is not seeking more
involved social relationships at the gym. Given the list of different types of relationships above,
how would you describe what Louise wants from other people at the gym.
2.3 What is your opinion?
a. Other types of relationships?
Read the material in 2.2 and discuss:
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Are there other types of social relationships from the ones listed?
Why is talking about social relationships complicated?
Why is there more to social relationships than friendship?
b. Read the interviews for Louise, Elly and Ed. (See Part 2)
Often when people talk about social connections and relationships, they are referring to friends
only. Describe the different social relationships in the interviews.
How do Louise, Ed and Elly differ in what they want from social relationships?
How did Louise, Ed and Elly develop relationships without staff involvement?
c. Complete the following and discuss your answers
True/False/Maybe
I am the closest relationship one person has — I must be a friend.
Many people with disabilities are lonely. Staff can reduce people’s
loneliness.
Some people don’t want others in their lives. Staff should respect that.
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d. Have your discussions identified the following issues?
 There are many different types of social relationships
 People can feel connected (and not lonely) because of a variety of relationships
 Most people have very few friends — but many acquaintances, familiar people from
shops, and other public places who recognise them and make them feel welcome or
colleagues from work, volunteering or other community settings.
 The relationship with staff can be important, trusted and enduring — but it is not a
friendship.
2.4
Want more ideas?
One debate in relation to natural supports is whether some relationships are more ‘valuable’ than
others. There are mixed views about relationships between people with disabilities. Louise, Elly
and Ed’s interviews suggest that relationships with different people offer very different things
and it is the mix and diversity of a person’s relationships that are most important.
Consider the following:
‘There is a tendency for researchers or advocates to focus on certain types of relationships
for people with (intellectual) disability such as with people without (intellectual disability),
rather than others types, such as with family, staff, or peers with intellectual disability.
However, perhaps the absence of relationships with people without (intellectual) disability
from social networks is the reason they are accorded more attention. In the process however,
they may seem to be accorded more value.
Care must be taken to avoid devaluing or diverting attention from other types of
relationships. Ideally each relationship offers a different value that adds rather than detracts
from the benefits gained from a person’s entire social network.’ (Bigby and Fyffe 2010)
What is the message about different relationships from the three paragraphs above?
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Topic 3: Step 1: What sort of a life does
each person want?
3. 1 Aim for this topic
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To describe where to start when building social relationships and natural supports
To understand that a life participating in the community means each person will be part
of relationships involving natural supports.
3.2 What is this topic about?
a. Everyone’s idea of a good life will vary — natural supports will vary accordingly
This topic asks the reader to think about the sort of life particular person with a disability might
want and how this affects the goal to work towards increasing natural supports.
‘People are different in their support needs, their aspirations and their
values.’ (Shakespeare 2006)
The starting point for increasing the natural supports in someone’s life is their goals, preferred
activities and interests. With these as a basis, community members and groups with shared
interests, values or causes can be identified.
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Start with what the person wants, what they are interested in. Their interests, hopes, talents,
learning ambitions and more. Then think about where this could happen.
Natural supports are not placements — suggestions about where to go, who with and to do
what, are different for each individual.
No one can create relationships. Staff can encourage and design opportunities for
relationships and social exchanges, which may then lead to friendships.
People have to want to do it and feel confident. This takes trust, time and building confidence
to speak up.
Families don’t have to do everything.
There are various roles for paid staff (e.g. bridge to increase relationships; investigate, match;
training and information; problem solve, check out different places or groups.) The biggest
role for paid staff is with those community people providing support (Klees 2013).
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b. It’s never too early in life to lay the foundations for social relationships and
connections
The vision for how you want/ your family member to live, even from childhood, can set the
scene for whether these opportunities are more — or less — likely to happen, even when there
are disruptions and deviations along the way.
Bjarnason (2002) argues that ‘early parental decisions and family support
systems will affect the claims of disabled persons to adulthood and his or her
possibilities to be both heard and understood. The support of professionals is
crucial in enabling parents to become effective supporters of their children.
….Those who were able to take action, were able to help their adult disabled
children join the mainstream and achieve independence.’
3.3 What is your opinion?
a. Choose one or two interviews to discuss from part 2.
All of our contributors had imagined what they wanted their life to be like — sometimes with the
help of close family members. These people had expectations about social relationships.
Relationships were a priority for their good life.
The starting point for a discussion was each person’s expectation to be involved in the
community with other community members, sharing common interests and patterns of life.
What each person wanted from life was different, and this guided what they wanted from the
community and social relationships, such as to build on a pre-illness identity; to have life in the
mainstream, part of the wider community; to be busy; to doing common activities beside other
people.
For each interview, identify what was important for each person as the basis for their
relationships with others and involvement in the community. How many of these interest and
pastimes had their origins in childhood?
Read Louise’s interview. What roles and contributions did she identify before deciding joining
the school council was right for her?
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b. See Poster: Being local matters.
What was important for Steph as the basis for planning community involvement and social
relationships?
Discuss:
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What does a (vision) or idea of a good life have to do with developing natural supports?
Are your experiences of what’s possible likely to enable or limit the social possibilities for
people you support?
What does the following statement have to do with natural supports?
‘You can’t do what you can’t imagine’ (Klees 2005)
What was Steph’s experience?
c. For discussion
‘Being a passive spectator, observer or family member without responsibility is not a strong
foundation for social relationships’ (Klees 2013)
What does this mean?
d. Checkout websites for ideas about hobbies and more
This website lists many, many hobbies, interests and pastimes. Think about someone you know
as you read the list. Are there ideas for what that person might like to do?
http://en.wikipedia.org/wiki/List_of_hobbies
Then start to think about how people might be involved in your local community.
3.4 Want more ideas?
a. Exploring what people want from life
What people want from life varies — we all set different priorities and have different values.
Consider the following two quotes — they suggest quite different things which may be important
to people.
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‘Control over one’s life
Convenience and lack of responsibility
Safety and security
Companionship and intimacy
Routine and familiarity’ (Shakespeare 2006).
In contrast Klees (2005) ‘stresses the importance of networks and relationships and describes
the good life as including: connections; a sense of belonging; a place or places to give; a few
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close committed relationships with family and friends and an even wider circle of those
committed to be on their life’s journey; respect from those you come in contact with.’
Explore the following:
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Does planning ensure many lenses are considered when exploring priorities for people?
Do individual support plans pick up social networking and relationships? Do people ask for
it? Is it a given?
b. Creating conditions for relationship formation
Relationships are not guaranteed but the likelihood is greater if the person is frequently present
and involved in typical community settings. Klees suggest:
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‘Discover community space — typical, valued, age peers, welcoming, accessible, reflect
person.
Ensure presence.
Plan and support a valued role — we all need to make a contribution (based on interests,
typical, valued, recognizable, familiar, contribution).
Other people — not just support people. Support people are a bridge to other people (valued,
present, compatible, and available)’ (Klees 2013).
Further Klees states:
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You cannot create relationships — but can encourage and design opportunities which may
lead to friendships; families don’t have to do it all.
The biggest support role is with those community people providing support.
There are additional roles for paid staff (e.g. bridge to increase relationships; investigate,
match; training and information; problem solve, check out place before presence — paid
person (if available) does the keeping in touch, and setting up meetings.
For discussion
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From above: What are Klees’ main messages?
Can you think of other precursors to relationships, such as: trust; time and confidence to
speak up or building skills for independence or competence in an activity (such as chess or
serving afternoon tea).
Choose any one of the interviews and see how that person planned new relationships. What
did they do?
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Topic 4: Being in the right place at the right
time for natural supports
4.1 Aim for this topic
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To describe ways to encourage natural supports in community settings after identifying
the goals, interests and past times of each person.
To start where natural supports are more likely to develop, that is, in places with people
typical of the wider community.
To build social connections where everyone can contribute. Natural supports involve two
way relationships.
The aim is for ‘the person to have a richer set of experiences; to have a
life more familiar to others – who can talk and relate to the person (ie
have something in common); to have more chances to learn and be
familiar and comfortable in other typical settings; to be surrounded by
more people who may provide natural support; and so increase the
likelihood that relationships of various kinds will occur.’ (Klees 2005)
4.2 What is this topic about?
This topic discusses how to get started with building natural supports. The ideas are relevant to
individuals, their family or support staff.
a. What was learned from interviews about helping relationships gets started?
 There were descriptions of being welcomed and a sense of belonging with a regular
group or an informal gathering or public venue. This meant being treated like everyone
else, ‘getting the gossip’, being part of whatever was happening, having the unquestioned
right to be present and involved.
 Same priorities Networking/ community connection was a high priority for family/
individual and neighbourhood group.
 Being mobile helps — either by bike, scooter, public transport, private transport — a lift
from others. Being able to ask someone for a lift is one sign of being part of a group.
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It’s not about money and always doing more! Our contributors give examples of
different ways meeting people — not only about doing more and more. The individual or
family can't do this alone. Can friends, other family or support staff give ideas about
spending time with others and finding community settings and groups which are
welcoming.
Relationships have highs and lows — they are not static and can be stressful, distressing
as well as reassuring and beneficial. For people with mental illness, anxiety etc —
importance of a comfort zone and finding ways to keep relationships going though ups
and downs of mental illness.
Trust matters. Individuals and families need someone to trust before being able to keep
information building about possibilities.
Be ready, be opportunistic, and look for many different ways. Relationships don’t
always happen is a planned or logical way. However it is very easy for staff, families and
our pattern of life to get in the way of relationships forming.
The importance of contribution. Everyone contributed to the community group,
friendships or social relationship. What was contributed wasn’t necessarily the same as
what was gained or appreciated in the relationship.
Many people will be getting support from different professionals and organisations.
Sometimes it is what staff or family do that helps or blocks people forming relationships
with others in the community.
b. Key points about promoting friendships
Friendships are perhaps the most elusive and complex relationship for everyone.
Key points about promoting friendship:
‘Building inclusion, friendships and relationships is complex and difficult — otherwise more
people with disabilities would have more friends.’ (Shakespeare 2006, p183)
‘Friendship is an elusive thing which cannot be easily engineered.’ (Shakespeare 2006, p 181)
‘Sometimes reports of friendships and relationships are “too rosy”. ‘Friendship between people
without disabilities and people with intellectual disability are in practice harder and more
complex than they first appear, and are usually rather different from conventional mutually
supportive friendships.’ (Traustadottir 2000 cited in Shakespeare, 2006, p 184)
c. How to have more acquaintances
Acquaintances are people who are familiar, enough to say ‘Hi’ and have a chat. They are in the
same regular activities, past times, locations, but we don’t really know them well. The project
participants described acquaintances and their importance:
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‘Being a local, a regular. Being a local means people look out for you — and notice when you
are not around.’
‘Acquaintances can be everywhere.’
‘Taxi drivers — a trusted relationship.’
‘Sees a lot people, if he goes up to the shopping centre they say hi Frank. I say who is that —
Frank says I don’t know … they must be from school.’
‘At the footy. Does enjoy watching the footy. Knew the guys by hanging around the club and
getting to know them. Footy club guys are friendly and hang out with them at other times.’
4.3 What is your opinion?
a. Where are the welcoming community settings
From the project, it was found that community settings had expectations of individuals wanting
to participate.
Read Frank’s interview (section 2.2). What expectations did the community group have of
Frank? Were these expectations reasonable and realistic?
Read the interview with a church member about the church wanting to be inclusive (section 2.4).
What ways did the church try to welcome and include people? Do these ways apply to other
groups too?
b. For discussion
What does the following quote mean? Do you agree? Are you prepared to do it?
‘We are all challenged to do more in our private and work lives to include people with
disabilities.’ (Amado 1993c, p324)
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c. What is your answer to the following?
True/False/Maybe
Some people are difficult to get to know and don’t know how to get to
know others. These people need help so that they are not lonely and
isolated from others.
It’s not enough to be friends only with people with other disabilities or
mental illness
Everyone can do something in return to maintain a relationship
‘It is the setting, not the characteristics of the individual, which determined the
level of social activity.’ (Shakespeare; 2006)
4.4 Want more ideas? Different approaches by organisations to building
natural supports
Promoting friendships and relationships has been tried a range of ways, from policy reform,
education and training and specific programs. Probably all have their place and usefulness.
The following materials provide descriptive excerpts about various approaches to building
natural supports tried by different organisations, as follows:
a.
b.
c.
d.
e.
f.
g.
h.
Policy and services.
Community connecting.
Training.
Education.
Technology and social media.
Volunteer matching.
Self advocacy.
Passing greetings.
Remember too, that in our interviews, several people had extended their natural supports and
community relationships without paid assistance. Individuals and families may be making all
sorts of community links as part of daily life. In the interviews, sometimes people didn’t
recognise that was what they were doing!
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a. Policy and services
The overall context for building friendships and social relationships can be promoted through the
policies of government and of services. For example, Shakespeare (2006, p182) ‘a focus on
friendship could bring about a major shift in the provision of services for people with
disabilities’. (p183): ‘policies which took the intimacy and friendship needs of people with
disabilities seriously would see support as more diverse than simply daily living tasks’.
Such high level policies can be both inspirational and give direction, but alone are lacking in
implementation guidelines. Despite many years of these types of policies, progress reducing
loneliness has been limited, for example, the following comments are still true today,
‘The current reforms in the disability sector are to full inclusion of people with disabilities in all
aspects of community life. Yet many people with disabilities continue to be isolated, lonely and
have few friends. A major criticism of community-based services is the difficulty these programs
have in enabling people with disabilities to participate fully in community life and connecting
them with other community members (Traustadottir 1993).
Policy alone is not sufficient to build more inclusive communities.
b. Community connecting
One more specific approach to building social relationships is the notion of a person who is a
‘bridge’ or ‘connector’ to the community. This role is distinguished from more typical support
roles and may or may not be a paid role. For example,
‘One approach is to use a bridge to the community who guide individuals with disabilities in the
community and introduce them to people who may be their friends. The ‘bridge builder’ or
‘community connector’ introduces the person with disabilities to new places, guides them to new
relationships, connects them with valued people in the community and familiarizes the person
with new opportunities. This approach is based on ensuring the person is exposed to and in
community environments and those communities have the capacity and willingness to become
involved with people with disabilities, including as friends. Bridge builders need to be able to:
focus on gifts and capacities of individual, not deficits; able to work by trust not authority; a
belief that people with disabilities are not in the community is because no one has asked them; a
willingness to let go after they have guided someone into the community. The role of bridge
builder can be structured in at least three different ways: as a community member; as a special
job for a staff person; as part of the job for all staff’ (Amado 1993b).
Asking staff to think about their role building social relationships can be a major change in focus
for staff, with significant advantages of the individuals, as follows:
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‘There is potential for staff to do more to help friendship, such as promote a community
development model of service provision, looking for opportunities for their clients to make
connections and engage in social activities. Rather than only group activities, facilitate
individualised social activities for clients’ (Traustadottir 1993).
Organisations wanting to support relationships between people with disabilities and community
members can adopt a variety of practical approaches. Amado (1993c) proposes that
organisations start by changing or widening the focus of the organisation and staff roles to
recognise that friendships and relationships are important and that emphasising independence
and skill building on their own can be limiting for the person. The message is one of ‘not doing
more — but doing different.’ Such a change of organisational and staff emphasis is a long term
obligation to individuals and understands that real friendships may develop but the individual
needs support to meet many people as part of a widening social network. Supporting
relationships means the support is never done — a long term obligation.
Organisations and staff need to consider views, attitudes and ways of working that may be
impeding staff supporting people with disabilities to develop social relationships. Amado
(1993c) cautions organisations and staff against seeing all difficulties lying with a community
which is not welcoming to people with disabilities,
‘The problem is often not community members, but staff and agencies. Staff often think it’s
attitudes of community members which is the biggest barrier to starting connecting efforts with
community member. Sometimes staff have unconscious opinions that the individual with
disabilities is not someone community members will value spending time with. Agency structures
and practices can get in the way and increase the distance between the person with a disability
and community citizens. Supporting people’s relationships can also mean re-kindling old ones.
Some staff may have views about what’s worth trying (e.g. family not interested).’
Oversimplifying the nature of both social relationships and the community is common (Amado
1993c). Two important complexities are that there are many forms of social relationships and
these are not all friendships; and that being connected and included in the community is a
subjective experience not a place.
The following are specific examples of organisations and approaches implementing a community
connector or community bridge builder approach.
Daehaeko Support network
The Daehaeko Support network is a small group of Canadian families and people with
disabilities working together to create person centred and socially inclusive supports. The
foundation for their activities is a vision for a ‘good life’. The ‘good life’ includes safety and
security in one’s home and in the community; connections to family, friends and a wide range of
acquaintances; a sense of belonging — people who notice if someone not present; places to give
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and contribute; a few close family and friendships and a widening circle of lasting relationships;
continual opportunities to grow and develop; respect from those you come in contact with’
(Klees 2005).
On a more day to day practical level – and towards the vision - ‘things that make the day
complete’ such as having an opportunity to invite someone in some way; having a chance to
contribute; including a range of people in your day; being involved in the mundane and
everyday things of life; being reminded that you belong; taking responsibility.
This group builds on social roles as a basis for relationships and identity. ‘A role is a person, in
place, doing something predictable’. Roles can involve functional contributions (such as an
artist, administrative assistant) of person; and contribution of person by their presence (such as
member of a crowd at a meeting, rally, festival.) ‘Turn interests into roles: not activities’. Then
identify activities which are related to roles. Activities versus roles means the difference
between, for example, she likes gardening; she is a gardener. The latter role suggests many many
activities arising from being a gardener. Examples of social roles: family (son, daughter, aunt,
cousin, mother); community and civic (voter, volunteer, board member); recreation and leisure
(athlete, gardener, artist, singer); work (employee, union member, co-worker, employer) (see
also O’Brien 2010).
The further component of their approach is ‘building a context for a relationship’ recognising
that ‘relationships can’t be created, but it is possible to promote situations where relationships
are more — or less — likely to occur’. Janet Klees (2013) notes things to remember about
building the context for relationships. These include realising that time and certainty are needed
if more enduring relationships are going to form; not changing existing arrangements unless the
options are better; and keeping talking together so that community members also see the
possibilities.
Community mentors
Wilson et al (2012) describe a training program for community members assisting them to
include people with disabilities in community settings, such as a community kitchen. The role of
community members was described as mentors and these people were all existing members of a
community or volunteer group and received brief training about inclusion and participation. The
project found the role of the mentor supported inclusion when community members were ‘people
who valued others’ also received brief training about how to include people with disabilities in
the community setting and the mentoring role was time and activity limited (ie not open ended).
Circles of support/ friendship circles
Recognising that many people with disabilities do not have established social networks, various
initiatives have tried to provide a framework upon which genuine friendships can develop. This
approach centers on creating circles of companionships and friendship for people with
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disabilities, frequently arranged by families. One approach is to strengthen already existing
relationships’ and natural social networks around the person with disabilities and use the existing
friends to develop new social relationships involving the person (e.g. MAPS). For people with
few or no pre existing social networks a more formal approach has been used to invite
individuals who do not know the person to participate (Amado 1993b, p291).
Some of the practical issues identified with the circles of support approach are: the groups and
the related social relationships may collapse; the group takes on different or confused additional
roles (such as fund raising or seeking services)(Amado 1993b, p291); and the group becomes
like a service in a way which is stygmatising for the person at the centre (Shakespeare 2006,
p181).
c. Training
Some programs may assist people with disabilities to learn how to make friends using an
education framework in the same way that other skills may be taught. Preferably such
approaches would emphasise social inclusion, and not just skills development, by incorporating
shared interests (e.g. art, animals) and not just geographical proximity or isolated skills. Shared
interests are a crucial foundation to social relationships. In the absence of a context for building
social relationships, training programs risk being patronising or irrelevant beyond the teaching/
learning situation (Shakespeare 2006, p182).
d. Education
Education about impairment and disability, and by people with disabilities and with mental
illness, is one way to challenge misconceptions and find common understandings and ways of
being together. In order to become friends, people with and without disabilities need to be able to
learn about disability, both in general and in terms of the specific individual with whom they are
engaging. ‘People with disabilities, together with support staff, need ways to be able to explain
and to educate colleagues, family and friends about what their own impairment means and if and
when accommodation is needed’ (Shakespeare 2006, p182).
e. Technology and social media
Technology and social media is re-defining the form and style of social relationships for
everyone. This is equally true for people with disabilities and more exploration of the role of
technology and social media enabling inclusion and extending social relationships is needed. For
example, ‘new initiatives should be assessed in terms of whether they impact on possibilities for
friendship and intimacy, helping build connections. For example, relying on email or phone can
be time efficient but reduces opportunities for social contact and face to face communication.
The screen may open new worlds or serve to deepen isolation and prevent acquisition of skills
and confidence required to conduct relationships in the everyday world. For people wanting to
be part of group exchanges and discussions, providing online discussion opportunities may build
connections and promote mutual support. For example, people with communication or social
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interaction issues may find online groups easier to negotiate than face to face
meetings’(Shakespeare 2006, p180).
Sherry Turkle: Connected but alone.
http://www.ted.com/talks/sherry_turkle_alone_together.html Turkle concludes that one aspect of
social media is that it gives ‘companionship without the demands of friendship’. This may be a
legitimate medium for people who want some level of social connection but do struggle with
face to face and more traditional social exchanges (for example, people with autism or anxiety
disorders).
f. Volunteer matching
Several programs have used volunteers as a basis for ‘one to one matching’ with a person with a
disability intended to develop mutually satisfying social connections. Examples include citizen
advocacy and Leisure Buddies programs. Amado notes that ‘many long lasting friendships
emerge from these efforts’. Similarly, many people who benefit from volunteering schemes (e.g.
older people, people with intellectual disability) the benefits outweigh any anxieties about
charity and paternalism which disability rights activists have sometimes expressed (Shakespeare
2006, p184).
The difficulties identified arise from incompatibility in matching or confusion of roles, such as
between advocacy and friendships (Amado p291).
The following is an example of a specific program for individuals in mental health recovery
based on volunteer matching.
Compeer Program Adult Supportive Friendship Model
Compeer describes the program as ‘Recovery through the healing power of friendship.’
http://compeer.org. From the website: the Compeer Model was developed using the three
elements of support — relatedness, autonomy, competence. Research shows that where these
elements are present in relationships, people feel more secure, emotionally open, and enjoy
greater well being and mental health. Supportive friendship involving: volunteer/supportive
friend; Compeer Coordinator; Mental Health Professional; and Peer Client.
The outcomes from Compeer are described as:
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Social inclusion, community integration, natural supports: being in the community; going to
social events, preparing for work or school, decreased needs for crisis services,
independence.
Matched peer clients feel connected with others in a meaningful way; now experience
companionship.
Matched peer clients experience enhanced self worth: A Compeer volunteer (supportive
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friend) engenders acceptance and empathy.
Matched peer clients can now experience more meaning and purpose, and hope for recovery.
g. Self advocacy groups
Voluntary groups for people with disabilities, including mental illness, create possibilities for
friendship and companionship, as well as having practical value in campaigning or providing
services. These groups bring isolated people together and make spaces for friendships to grow.
These groups also offer spaces where people with disabilities can socialise with others on their
own terms (Shakespeare 2006, p181) and can be a foundation or preparation for wider
community involvement.
Self advocacy groups engage in personal support networking and community development
through organising and consciousness raising. Individuals and self help groups become involved
with other community groups and voluntary associations with broadened opportunities to meet
people who will eventually become friends (Amado 1993b).
Self advocacy is primarily a group process of mutual support, information sharing and action as
determined by group members. Self advocacy is important for many people with a disability,
most typically those with an acquired brain injury, intellectual disability or severe
communication impairment, whose voice is most at risk of not being heard. These groups are
often isolated within disability advocacy, within support services and within the community
more generally (Fyffe et al 2004).
h. Passing greetings with strangers in a shared situation
Many of the approaches to building relationships have depended on proximity and familiarity
within local communities. Bigby and Wiesel (2011) introduce the concept of ‘brief encounters’
from urban studies. People who don’t really know each other will greet each other in a shared
situation, perhaps discuss the shared experience, and may not see each other in other situations,
or even see each other again. Examples where this occurs include being in a crowd at the footy;
waiting in queue at Telstra or the post office; simply being regularly in your street or at a
favourite place or shop.
Encounters are ‘exchanges which are fleeting or more sustained between neighbours,
participants with a shared purpose in a public space, consumers and shopkeepers, passengers
and taxi drivers (or fellow travelers), standing in a queue which are central to life in a city (or
any urban space)….Encounters can be convivial through to hostile but provide another lens to
consider the dimensions of social inclusion’.
The point is there are many different types of social relationships.
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Topic 5: It’s not as simple as it sounds!
5.1 Aim for this topic

To understand the complexity of social relationships and how many ways social
relationships and natural supports can be misunderstood, disregarded or disrupted.
5.2 What is this topic about?
a. Building social relationships is not simple
It’s not simple! Relationships are complex, changing, inter related. Simple circles of social
relationships around people are inadequate to describe social relationships.
‘Staff can do things that friends can’t do. Families can be limiting. Friends can
help people move beyond human service goals. Families provide things that
friends can’t.’(Amado 1993)
b. Social relationships vary, change and aren’t always clear cut
 We’re not just talking about close friendship — there’s more to being socially connected!
 Friendship has multiple forms and can provide companionship, assistance, guidance and
support, (Salmon, 2013), in all sorts of ways.
 It’s how you feel about it — lonely or that you belong. There are no clear rules. It’s not
the number of people that matters or how often you’re in contact.
 No one can insist someone else is a close friend. Friendships are two way.
 We all have the right to be in public places (if we want to be), to be treated respectfully
and politely by other members of the community and staff in shops and businesses. This
can be where social connections start.
The following diagram is trying to depict the inter relationships, changes and evolutions that can
happen within a network of social relationships. Co-workers become friends, but not necessarily.
Many people are acquaintances and not friends. And so the variation and change continues
throughout life. There are many more cogs and wheels and arrows for change which could be
added.
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Friends
Coworkers
Meeting lots of people
in the community
c. Friendships and social relationships are not always happy or without
‘Thedemands.
complexity of friendship is often ignored. In encouraging the possibility of
friendship, the reality is it will bring pain, joy and possibly both… with
friendship comes the possibility of rejection or betrayal…. Sufficient friendships
cannot be measured numerically, and friendship alone may not be enough.’
(Uditsky 1993)
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While rights can be insisted upon — friendships can’t. However, it is possible to create
circumstances where friendships and other relationships won’t occur!
‘Many fundamental aspects of living in the community cannot be
legislated for, such as the need for informal social relationships with
partners, friends, family, and acquaintances ... while a rights agenda can
open doors into communities or institutional roles, achieving social
inclusion and a sense of belonging for people with intellectual disability in
the form of individual social connections or civic friendship requires
change on the part of community members, which cannot be mandated.
The challenge remains to turn social inclusion from a cult or idealized
value to functional value, so that understandings of how it can be done are
embedded in the service system.’ (Reinders 2002)
c. Human service organisations are acting from outside the community
Human service organisations are often outside communities and therefore struggle to connect to
people to community members.
‘Given the human services culture… it is not surprising to find
friendship, to varying degrees, considered in the simplistic manner the
field knows best… relationships have become one more domain in the
development of individualised service or program plans. .. the
encouragement of friendships is more than a programmatic.’ (Uditsky
(1993)
Communities are complex and fragmented. There is no one ‘community’.
‘Community care has meant that most disabled people are living in the
community, just as the concept of community has been eroded.’…’traditional
ties of family, religion and community have declined.’ (Shakespeare; 2006)
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5.3 What is your opinion?
a. Is this your experience too?
The main messages from contributors to this project are:
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The importance of following personal priorities; of contributing to social situations and
being a natural support for others. The starting point is what sort of a life do you want?
Not the details but the guiding directions. Identify people’s interest and talents are a
foundation for social relationships and connections.
Being part of a community, a network or having many social and friendship relationships
doesn’t just happen. Relationships often begin and are maintained from following an
interest, study and/or work. Forming a relationship is not a single event of joining a club
or becoming a volunteer. Joining a group to pursue a common interest can be a good
starting point.
There are many different types of relationships. These can all reduce isolation and
loneliness.
Relationships and friendships change over time, and each individual has examples of
successes and distress. This is a lifelong and repeated process and not just a consequence
of one relationship in time.
What everyone has in common is their pursuit of, and belief in, being part of and
contributing to, their local communities.
There may be setbacks — for all sorts of reasons… but people keep going again when
circumstances improve
There is no one way to be socially connected. People want different things from various
relationships and it changes.
Discuss each dot point. What are the implications for how you work to support someone in the
community?
5.4 Want more ideas?
For discussion
Discuss the statement: Human services and organisational practices can add to loneliness.
Consider also:
‘ A major criticism of community-based services is the difficulties these programs have in
enabling people with disabilities to participate fully in community life and connecting them with
other community members’ (Traustadottir 1993).
‘Professionals run the risk of bringing human services practices into the community domain to
form friendships — like any other program’ (Uditsky,1993)
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Do you agree or disagree with these statements?
What can you do in your role to connect people with community members? Is it your role?
How can the disability system and mental health systems work to increase community
connection from a starting point outside the community?
Do you agree or not that your role is outside the community? Do these statements match your
experiences or not?
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Topic 6: Where is the directory of natural
supports? There isn’t one!
6.1 Aim for this topic


Natural supports are not a placement or a support service.
Being in the community is not a place or an event.
6.2 What is this topic about?
a. Natural supports are not something you go to
Being part of a community, a network or having many social and friendship relationships doesn’t
just happen. Nor is it a single event of joining a club or becoming a volunteer. These
relationships and friendships change over time, and each individual has examples of successes
and souring, or simply moving on. What these people have in common is their pursuit of, and
belief in, being part of and contributing to, their local communities.
b. The aim is not the same number or type of social relationships for everyone
Interview material gives ideas about joining a school council, footy fan group, dance group,
badminton club, gym, and animal welfare group. There are no details given for these groups,
they are important to each person and will be swamped if everyone joins. Our advisers and
contributors described too many examples of a local group being welcoming to one person, and
then more people simply chose that group as the ‘place for natural supports’— but not because it
was important to them. The result was that community relationships were fractured for everyone.
c. Finding the right community group
What each contributor has shared is how these groups were identified — that process of
questioning and experimenting is what everyone can learn from. See posters:
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Are you a bridge to the community?
Getting started: how to find groups in your community.
Being local matters!
6.3 What is your opinion?
a. Complete as an exercise
Think about someone you support. Who are the people in the person’s life? That is, people who
contribute to a ‘sense of belonging’ and familiarity in day to day life/ in the local neighbourhood
and community by providing assistance, information, companionship, recognition, friendship,
interest in a common activity or pastime. Think about people:
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Near to home (such as neighbours, corner shop).
As part of community and activity groups (such as church, sports club, hobby club).
Businesses and commercial settings (e.g. bank, supermarket, coffee shops, bus drivers).
Friends and acquaintances.
People ‘who know you and your family’ and say ‘hello’ (such as family friends).
This is not people who are paid to provide support, such as attendant carers or general
practitioner, although these people may be part of your life in other ways, for example, when you
see them at the pool or down the street and say hello.
Let’s make a list:
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Where is the person a patron or customer?
Who is a friend, acquaintance, co-worker or neighbour?
Where is the person a member of organisations or groups? (Etmanski 2004)
Other prompts:
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When you go down the street: who/ how many say hello, stop for a chat.
What do you do with your neighbours: do you do for them? Do they do for you?
Who gives you a hand at: the bank, supermarket, bus stop etc.
Who notices if you are away from your usual commitments/ classes such as if you are sick.
Where do you spend regular time each week and who are you with during these times? Doing
what?
Who would you contact of you needed a hand, some help — and family weren’t available? If
you were down the street — is there a shop you would go into or a friend to contact?
Who looks out for your family member/ you?
6.4 Want more ideas?
How to know when it is all working? Klees suggests:
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Is there a satisfying contribution being made?
Is there learning happening?
Is there a sense of pride present?
Is there relationship building happening?
Is it leading to more opportunities?
Think about someone you know, or select an interview from section 2.3. Use the questions
above to decide if the group or community setting is working for the individual and the other
people involved?
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Topic 7: Partnerships between individual,
staff and families, what does it take?
7.1 Aim for this topic

To explore the meaning of collaborative partnerships between individuals, their families
and staff.
7.2 What is this topic about?
a. Building trust between people is essential
Trust is critical. Building trust takes time. We will all try different things if someone we trust is
there or says it’s OK. Several contributors to the project emphasised the importance of trusting
people and that this occurred following regular and long term contact.
Families and individuals need people to trust who will provide good information, suggest
possibilities and respectfully challenge family assumptions.
b. Seven principles of partnership
Workers/organisations need to:
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Be an effective communicator
Be professionally competent
Be genuinely respectful
Demonstrate commitment
Strive for equality
Take action through advocacy
Build trust
‘Trust is the keystone principle. It binds all of the other
values. Trust means having confidence in someone else’s
reliability, judgement, word and action. When individuals
and family members trust a worker (or an organisation)
they will accept what is suggested even when they are
doubtful and unsure.’ (Turnbull et al 2011)
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Note : Advocacy refers to speaking out and taking action. A worker who is an effective advocate
for the individual and family members will act to prevent problems; be alert for opportunities to
advocate; pinpoint and document problems; form and broaden alliances; and seek win-win
solutions.
There are other reasons for families and individuals feeling a lack of trust in organisations, such
as:
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Anxiety and lack of confidence. For some people this may be a consequence of paranoia.
Not all families want close relationships with each other or with organisations.
Staff being viewed as oppressors. Shakespeare (2006, p180) describes the risk of staff being
viewed as exploiters which ‘neglects the staff helping role’. ‘There has been considerable
focus on oppression (of disabled people by non disabled people) and less focus on
partnership and alliance.’
d. See posters:
Staff — are you a bridge to the community?
Staff advertisement.
Ideas for parents.
Being local matters.
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7.3 What is your opinion?
a. Quiz: Are you a trustworthy worker?
Are you able to work in a way that builds trust with families and individuals? Discuss the
meaning of each statement. Then discuss your answers to the following:
Do you/ does your organisation:
Yes/No/Maybe
Communicate by exchanging information in open and
honest ways?
Earn respect by treating all family members with dignity and honouring
their cultural values?
Strive for equality by sharing power with families and individuals?
Advocate for individuals and families and take actions to achieve
‘win-win’ solutions?
For the perspective of individuals and families, are you:
Reliable — do what you say?
Using sound judgement?
Maintaining confidentiality?
Confident and skilled to act in the best interests of people you support?
Confident and skilled to follow through on what was agreed?
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b. For discussion
Discuss the implications of the following:
It is necessary for staff/ organisations to build a relationship with families of 3 plus years
before families can trust (Klees 2013).
How can families and individual trust services when staff turn over every 12 months or so?
7.4 Want more ideas?
Family sensitive practice (Bouverie website) in another way to describe how to build
relationships with families. What is the message from the following quotes?
‘All dealings with families should be as direct, open and honest (transparent) as is practicable,
acknowledging that confidentiality, privacy, duty of care and broader protective issues may be
particular obstacles to implementing this principle from time to time.
Provide clear and detailed information to families regarding the nature of the service, options,
consent needed and any likely consequences or limitations of the service. (Bouverie website)’
‘All family members should experience contact with an agency as predominantly respectful, i.e.
acknowledging and valuing family members' humanity, time, personal sense of agency, expertise
and priorities as well as their particular cultural values and mores relating to gender,
socioeconomic or specific ethnic issues.(Bouverie website)’
Do you already use these ideas? Discuss.
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Topic 8: Can staff be friends? Exploring
roles for staff promoting social relationships
8.1 Aim for this topic
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To explore the difference between natural supports and paid supports
To describe the roles for staff consistent with promoting social connections
8.2 What is this topic about?
a. Roles for staff encouraging natural supports
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Allies promoting inclusion. Shakespeare (2006) and Klees (2005) talk about the importance
of supportive allies. A similar idea is advocacy — ‘sticking up for someone’; ‘standing
beside’ (See Turnbull et al 2011).
Companionship. Personal assistants may provide companionship as well as practical help
(Shakespeare 2006).
Planning: through individual funding attend to social connections. Brainstorming ideas and
possibilities. This means not trying to solve the issue in question but opening it up for
discussion.
As a bridge - building relationships from what individual and family does; what family or
individual’s network does. Facilitate relationships; investigate, match; training and
information; problem solve, check out place before presence —— paid person (if available)
does the keeping in touch, meetings (see Klees 2013).
Extending social relationships in the family. Find ways individuals contribute back through
their core identities/ roles in families (e.g. brother, son, aunt, etc) (Klees 2013).
Keep oversight of connectedness especially for people who struggle to connect to the
community and or have other unmet needs.
Knowing when to withdraw and when to stay for the long term. Support staff have to know
how to withdraw, what steps (task analysis) and not over caring. This can still mean a long
term involvement (Klees 2013).
Not getting in the way of social relationships forming. This applies to all staff roles. (For
example, see Uditsky,1993).
It is arguably a foundation role for all staff to support a: ‘plurality of relationships of importance
to people.’ For example, mental health professionals: work with people to support and sustain
their existing resources, assets, networks and relationships (Department of Health 2011).
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b. Can staff be natural supports?
No but staff can be very important in people’s lives. Relationships with staff can involve emotion
and empathy. It is not desirable for worker or employer to have a relationship which is devoid of
attachment and care.
However, there are different roles for staff and natural supports. Staff can be allies but this is not
the same as friendship. It is important not to misconstrue what relationships with staff are and
not to down grade them either. ‘Natural personal and committed relationships and good paid
support are powerful influences in the life of a person with a disability. However, these roles are
not interchangeable. People do not move from one to the other…. There are different
expectations and tasks assigned to each of these roles.’ (Klees 2005)
Staff can help or impede the development of natural supports.
Relationships with staff can be significant for people. These relationships can be long term
where people know each other well. However, if staff are the only relationships in the person’s
life the individual is isolated and vulnerable if/when staff leave.
All forms of social relationships are important. Staff can be a critical relationship e.g. people
with a mental illness noted the importance of medical staff for them to be as well as possible and
therefore be able to participate in the community.
c. Roles and practices where staff get in the way of natural supports
Any roles which lead to unnecessary isolation and separation for the community; or promote
dependence on the worker are inconsistent with promoting natural supports.
There can be unhealthy relationships between staff and individuals, such as:

Relationship between staff and individual being viewed without emotion. Shakespeare (2006)
notes the risk that staff are treated as servants if the individual-staff relationship is devoid of
emotion, or as commodities (Reinders and Schuengel in Bigby and Fyffe 2010).

Isolating the individual through support. This may occur through one to one support from a paid
worker. … rather than the support worker being a catalyst for the person with intellectual disability
to participate in activities or build new friends and acquaintances, they themselves become a direct
substitute for friends or meaningful activities (Bigby and Fyffe 2009).
8.2 What is your opinion?
a. Do all staff roles provide ways to support social relationships?
See posters:
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Staff — are you a bridge to the community?
Staff advertisement.
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b. For discussion
Give your experiences of family or staff assisting or hindering the development of natural
supports for someone you know.
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Describe what happened.
What relationships were assisted? How?
What relationships were blocked? How?
Role play the differences in the staff roles?
c. For discussion: the roles for staff consistent with promoting social connections
Consider:
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What responsibility do staff have to encourage social relationships beyond themselves, given
that most staff leave and the person is then left without close relationships?
What staff roles are consistent with promoting natural supports?
How can staff roles interfere with the formation and maintenance of natural supports?
Has your discussion identified the following issues?
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Is companionship the same as friendship? Are staff members also companions?
Do the roles of people, such as taxi drivers, differ from support staff or professionals? Aren’t
they all providing a service?
Do you agree there are many types of social relationships (see section 1.4). The term ‘friend’
does not capture all the possibilities and expectations people have of different relationships.
8.4 Want more ideas?
a. Staff are not friends
What is a friendship? Are relationships with paid workers ever friendships? What do you think?
The following statements introduce different points.
Do you agree or disagree with each statement
Yes/No/Maybe
Staff relationships with individuals do involve emotions.
A relationship with emotions is still not a friendship.
Companionship is not the same as friendship.
All staff have a key role assisting people with disabilities
form relationships with others.
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‘A traditional stress on professionalism, impartial treatment and distance
needs to give way to ‘commitment and involvement’ (Traustadottir 1993
p122). This implies emotionally based relationships, ‘these connections
often bear little resemblance to close relationships such as friendship’. The
core component of delivering care or support must be development of
relationships, knowing each person well, and watching and coaching this on
the part of supervisors (Reinders in Bigby and Fyffe 2010).
Lutfiyya (1993) concludes that the relationships between people with
disabilities and staff are important but they are not friendships. ‘There
are many instances whereby individual staff provide excellent support to
people with disabilities where there is mutual respect but not friendship. The
quality of these relationships should not be disregarded.’
‘Staff can be pivotal in promoting inclusion and friendship. Taxi drivers,
support staff, various professionals do emotional work including friendship
and validation, not just the obvious practical tasks. Many people with
disabilities rely on their support staff for companionship as well as practical
help.’ (Shakespeare 2006, p180)
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Topic 9: Summary: ‘Do’s and don’ts’
9.1 Aim for this topic
To summarise for staff ideas building and maintaining natural supports.
9.2 What is this topic about?
As a support worker/ staff member:
a. Do:
 Do see building social relationships as a role for all staff.
 Do think differently. Do recognise there is an endless range of interests, pastimes, hobbies
and vocations in the community.
 Do create conditions for relationships to form and keep going. Do allow time for some
relationships to develop and strengthen.
 Do build ‘give and take’ into ideas for relationships. Do recognise what each person
contributes as well as receives.
 Do help build skills and independence to assist community involvement.
 Do problem solve early!
 Do keep talking with community members so they understand community inclusion too.
 Do keep communication open and shared.
 Do support roles with contribution at the core: like fan club member, bird watcher, family
member with responsibilities. Do turn interests into roles: not activities. Do identify
activities which are related to roles.
 Do think about the community as many experiences — not as a place.
 Do find ways to do things that don’t depend on money.
 Do find what people can do now!
b. Don’t
 Don’t underestimate the social links the person or their family may be making as part of daily
life that you don’t (need to) know about.
 Don’t aim for variety all at once when building relationships. Don’t rely on ‘one offs’ and
variety as a basis for building relationships.
 Don’t change something for the person until you’re clear what the person is going to is
better.
 Don’t be surprised or panic if relationships have ups and downs.
 Don’t risk limiting the ideas available to individuals and families because you have limited
ideas.
 Don’t support roles where the person is passive: spectator, observer, or family member
without responsibility.
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Don’t think of natural supports as a way to save on paid supports — they are different.
Don’t expect families / individuals to do everything or nothing.
Don’t think there is a directory of ‘natural supports’ — this means you are thinking about
natural supports like placements.
Don’t concentrate on skills and forget relationships.
Don’t assume things can happen now only if there is more money.
9.3 What is your opinion?
a. About forming relationships
Discuss poster: Forming Relationships
What can you do in your current role to increase natural supports for people you support?
Brainstorm possibilities for your role.
Also use the posters ‘how to connect to your community’; and ‘staff advertisement’ to promote
discussion.
b. Likelihood of relationships in different settings
Consider the following scenarios. Think about Klees (2013) guidelines for increasing the
likelihood of relationship formation. That is, plan routines which are predictable, settled, and part
of the routine in every week.
What relationships are likely to be formed in the following situations? What are the enablers and
what are the obstacles to relationships forming?
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Five people with disabilities join a small exercise class at a neighbourhood house.
Five people with disabilities meet together at the local coffee shop every week.
Several people with disabilities decide to join the library.
One person with a disability starts going to church.
d. What community groups can do
Read the interview about the church wanting to be inclusive. Think about a club or organisation
you know. What practical strategies does your club do already to welcome everyone? What else
could it do?
What do you do when you are not at work to promote inclusion?
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9.4 Want to know more? Some useful websites
Here are some websites used for these resources. There will be many more.
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Belong Matters is a ‘small not for profit organisation developed by families who have a
passion for social inclusion!’ http://www.belongingmatters.org/
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Bouverie website. Family sensitive practice and family sensitive training,
http://www.bouverie.org.au/content/family-sensitive-practice
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Country Women’s Association website. http://www.cwaofvic.asn.au
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Compeer describes the program for people with mental illness as ‘Recovery through the
healing power of friendship.’ http://compeer.org
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Deohaeko Support Network ‘is a group of families who came together nearly 20 years ago to
think about and plan for good lives for our young adult sons and daughters who have a
developmental disability.’ www.deohaeko.com
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Hobbies and interests. http://en.wikipedia.org/wiki/List_of_hobbies
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Janet Klees introduces Deohaeko Support Network and suggests some strategies to help build
relationships for people with disability. www.youtube.com/user/CommResourceUnit
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Michael Kendrick consulting www.kendrickconsulting.org
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MoodGYM http://www.beyondblue.org.au/resources/for-me/young-people/helpful-contactsand-websites This free, fun, interactive program helps young people identify and overcome
problem emotions.
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ReachOut. ‘Take control of whatever you’re going through. Use ReachOut.com to figure
things out and make life better’. http://au.reachout.com
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Sherry Turkle: Connected but alone. The role of social media in social connections.
http://www.ted.com/talks/sherry_turkle_alone_together.html
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PART FOUR: IDEAS ABOUT SOCIAL
CONNECTIONS FOR INDIVIDUALS AND
FAMILIES
4. 1 Purpose of the resource materials
These materials are intended to promote discussion for people with disabilities, including
disabilities arising from mental illness, to think about ways to be more socially connected. The
information is for people who are ready and want to become more socially involved in their local
community. For some people the starting point will be a support group.
Ideas for people who are ready to extend their social relationships
The materials are also relevant for family members, often parents, of people with a disability.
The ideas for parents of young children ‘set the scene’ for their family member’s social
relationships in the local community, as well as for families wanting to find ways to encourage
different social relationships for their adolescent or adult family member.
There are six topics which are interrelated. It is not intended that the material will be worked
through necessarily sequentially or in total. Choose the topics and activities which are relevant to
you. The topics are:
1.
2.
3.
4.
5.
6.
What are social connections and why are they important?
What sorts of relationships are we talking about?
What can I do? What do I bring to a relationship?
What can families do?
Ideas for joining a community group
Quick tips: do’s and don’ts
Each topic is structured as follows:
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What is this topic about?
What is your opinion?
a. How these materials were developed
We asked people who were socially well connected to talk about their experiences.
b. Using the materials
Choose a topic that is relevant to you or your family. Read through the aim and what the topic is
about. Base discussion around this material to clarify what it means to everyone. Select an
activity (or more) from the ‘what is your opinion?’ section and encourage discussion.
A discussion leader could help to ensure all the information makes sense to everyone and what’s
important for them. A good starting point is to make sure everyone has the same understanding
of key terms and phrases.
The materials parallel information in Part 3 for staff training and development. In practice, Parts
3 and 4 can be used as relevant from all perspectives.
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Topic 1: What are social connections and
why are they important?
See the poster: Tip sheet about relationships
1.1 What is this topic about?
This topic considers the importance of social relationships in people’s lives and how the sort of
life each person wants ‘sets the scene’ for forming a variety of social relationships and
connections.
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Social connections are an important part of life which can be limited for many people with
disabilities.
People without social connections can be lonely.
Natural supports — or social relationships - are more likely to develop in places with people
typical of the wider community.
The vision for how you want/ your family member to live, even from childhood, will set the
scene for whether these opportunities are more — or less — likely to happen.
Different individuals and families have different values and priorities which will determine
what sorts of social relationships are important.
Start with what you and your family member want, and what you are interested in.
Natural supports and social relationships are not places to be. Suggestions about where to go,
who with and to do what arise from each individual’s priorities for life, preferences and
interests.
You cannot create relationships — you can create conditions for relationships or conditions
which disrupt or get in the way of relationships with community members.
a. What we learned from participants in the project
Refer to any of the following interviews in Part 2:
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Elly knew how she wanted life to be because of her pre-accident identity and her determined
personality.
Frank’s parents wanted Frank’s life to be part of the wider community.
Amanda joining the school council. Amanda was able to contribute based on her previous
experiences and skills, be regularly part of the meetings and gained confidence for
participating.
George playing chess. George identified what he wanted based on his interest and found a
chess group. He also re-appraised what he was getting from being part of that club.
Lisa developed a role for herself as a presenter to school and community groups. She wanted
to share her experiences of disability and discovered people saw her as a role model for them
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to be confident about speaking up. Others told her she was competent and well organised,
with a sense of humour.
Frank’s family made many comments about their vision for Frank’s life, such as:
‘We wanted him to be accepted in the normal community’.
‘Being in the normal community was as much as we wanted.’
‘Treat him as normally as he is able to be treated. Don’t treat him with kid gloves. You’ve got
autism, —get out and do it, if you can’t do it that’s fine. He used to go to riding for the disabled
but that got too stressful for him so he now does RDA carriage driving. Our idea was that he just
coped if he didn’t we took time out and started again.
Frank’s family started with the premise that Frank will have a social life. ‘Got to keep on going,
got to give him something that is not the same every day. We wouldn’t like the same thing every
day so why would he?’
b. The importance of working out what suits you
Try to work out what a satisfying level of connectedness with others is for you. We all vary in
terms of what makes us feel lonely or socially connected. This can change at different times.
Is your family a source of social support? Not all families want close relationships with each
other. For many people, but not all, involvement with family members is important. Families
assist people to initiate, have a go and problem solve to link to other people — as well as what
families do anyway.
Do you need staff to help make the links? Some families don’t support what a young adult might
want to do or don’t know how best to help. Sometimes other people with disabilities can be an
important source of social connection and provide ways to plan for other social opportunities.
c. Things don’t always go well
Deciding to be part of a wider range of community situations doesn’t automatically go well
every time. The following examples reveal that what the community setting is offering may not
be what someone wants. In both cases the following people did something else where they were
welcomed and comfortable.
‘Ed has had an experience where he was not allowed into the pub/night club… bouncer said it
was because of his rugby top. Three other males that he was with all had rugby tops on. Family
friends all felt it was this person who knew Ed and knew he had a disability.’
‘I attended a U3A group — given lots of instructions and told “you must come every week” - so
I decided not to return’ (CAG member)
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Being with others is not a panacea for everything. Even with strong community connections and
varied social relationships, people may still not have full lives nor have all their needs met.
1.2 What is your opinion?
a. Why does a vision for life matter?
What sort of a life do you want for your family member? How does this idea set the scene for
developing social connections? What might be limiting or restricting your thinking of the
possible?
Discuss the quote: ‘You can’t do what you can’t imagine.’ (Klees 2005)
b. Is ‘safe and happy’ enough?’
Families often say their family member being ‘safe and happy’ is what they want. When
families (or staff ) say this, what does it mean? Points to consider:
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Is someone really safe in isolation from the wider community?
What is better and not just safe?
Can being known in the wider community increase safety with more people ‘looking out for
someone’ — or is this unrealistic?
c. How important are neighbours
Read the following experiences and discuss the importance of neighbours for people feeling a
sense of belonging; social connection; and as a consequence for safety and security.
How did people develop ‘neighbourly’ relationships? What did each person give and receive
from neighbours?
Building relationships with neighbours
This is what project participants did:
‘Regular greetings and helping each other out.’
One neighbour: who does the bins; introduced cat to him; incidental contact and greetings.
In contact with the neighbours via text, he will feed the neighbours dogs if needed.
Neighbours ‘step in if they think they are needed.’
Have to say hello to start friendly relationship. Live across the road. I went in when I was not
well and was taken to hospital.
(We have) Community activities in the court, Christmas parties, BBQ.
A very good neighbour who would notice if he was not around.
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Neighbours watch over houses. Not too intrusive.
Importance of neighbours during emergencies
‘One person had to evacuate his flat due to a flood in the area. He was living alone, mobile
phone was flat and had to flee from the flat on his electric wheelchair, knowing the wheelchair
battery had been going flat quickly over the last few months. Friends and family who were trying
to get to him were stopped by road blocks’.
How could this have been different? What would you do in this situation? Do you look out for
the neighbours? Would they look out for you?
We all have vulnerabilities. How can yours be overcome through greater social connectedness?
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Topic 2: What sorts of relationships are we
talking about?
See the poster: ‘Getting started to connect in your community.’
2.1 What is this topic about?
a. There are many ways to be socially connected
That is, there are all sorts of ways not to be isolated and lonely. There are many forms of social
relationships — most people have few friends but lots of other people they know, recognise, seek
advice from, and spend time with and so on. Here is a list of possible relationships:
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Family, including extended family
Friends
Family’s friends
Neighbours.
Acquaintances
Members, staff or volunteers in community groups or organisations
Colleagues at work or study
Businesses where person is a patron or customer
Contacts on social media and IT
Social action groups with a common cause, such as Self help/ advocacy groups where people
meet for common interests and causes
People you greet in public spaces such as sports grounds, the local streets, but perhaps don’t
see again or not very often.
People you meet through pets
b. What did we learn from participants in the project?
The following is a summary of the interviews for Ed, Louise and the Consumer Advisory Group.
(You may also want to read their full interviews in Part 2.)
For Ed:
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Friendships and opportunities sometimes grow from family connections, sometimes from
school friends and contacts
Some community clubs and venues are more welcoming than others, or it’s just time to move
on.
Being a regular, just hanging around the club, for a long time, and we can all fit in
Having lots of interests matters — things to do at home, things to do with others
When people know you, they will offer a hand if needed e.g. a lift
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If you want something — go get it!
There are more possibilities in the mainstream community
Family and friends stick up for you
Being as independent as possible can help to be socially connected
Ed has many interests and is involved in a variety of community settings.
For Louise:
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People can feel included in settings where people share a common goal, but don’t necessarily
connect at any deep level.
Despite being little in contact with neighbours there can be expectations to notice the
unexpected or unwanted, while maintaining privacy.
(What makes it a suitable environment) You don’t have to develop relationships with people,
that require maintaining or ongoing support, and I can choose the level of interaction but I
am still socially included.
Not everyone likes groups.
Many groups based on common interests have options for how much social connection
people want.
It’s possible to feel supported but not through talking — sharing a common experience
Pets can be important as social bridges.
Early experiences are important for later life interests and pastimes.
For Consumer Advisory Group members:
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Family and friends can’t always help — role of professionals important.
Staff are important side by side with natural supports — the roles are not the same.
Staff can sometimes do what people who are close can’t always help with.
Relationships can change and evolve — being a regular in a business means being recognised
in other places like the park, supermarket or down the street.
Look for people’s talents and interests before joining a community group.
A self help group is important for some people — to build confidence, feel safe, share
information experiences and learn from each other.
Being a local and a regular means people will stop for a chat down the street.
b. About being a friend
Connected people knew how to build relationships and ‘put in’ with others. Being linked to other
people is not about receiving only: it’s about give and take. All the advantages of having people
in our lives are relevant to everyone.
Many interviews describe the importance of ‘give and take’ in relationships, and how different
people’s contributions to relationships varied.
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‘A friend (of Ed’s) has just had a serious motor bike accident …..I will see him if he needs
anything and will help out if he needs things done. Have known him for a long time. What
makes a good friend? Someone who will support, have fun with, a couple of drinks’.
(How do you give back)? Return favours, offer skills e.g. computers — fixing neighbours;
loading up trailer and taking things away.
Some people didn’t realise what they had to give to a relationships until others in the group let
them know.
‘True friendship’ is not common or easy. People can be connected with others and feel that they
are welcome and have a sense of belonging without ‘true friendship’.
2.2 What is your opinion?
a. Think about your social network or that of your family member
From the interviews we learned that people who feel socially connected have a variety of
different types of social relationships; that these relationships may change; and are not expected
to be forever. People had few close friends but lots of different relationships. The relationships
were often formed as a consequence of pursuing specific interests or the routines of daily life for
shopping, being a neighbour etc.
Describe the different relationships your family member has using the list above. Did you
identify additional types of relationships? How did these relationships get started?
b. Your thoughts about Ed, Louise and the Consumer Advisory Group
Select one or more interviews to read in detail (see part 2).
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How do your experiences match or differ from Ed, Louise and the Consumer Advisory
Group?
What practical ideas can you think of for increasing the likelihood of your family member
developing different types of social relationships?
What about relationships with staff? Are relationships with staff the same as other social
relationships?
c. About friendship
Most of us have few friends and many other sorts of social relationships. (See the examples of
other types of relationships above). Nonetheless a close friend can be very important.
What can be learned from the following experiences?
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Elly found that friendships developed from other of relationships. ‘I have contacts with friends
beyond the neighbourhood house. There is a previous neighbour who I stay with in another
town. ‘
Frank’ family described two friendships – one with origins from school and another which has
evolved from a volunteer matching program.
‘One friend from school. Friend keeps in contact — takes him to the movies (3 or 4 times a year),
sends texts. A movie will come out the Frank wants to see and he will text James ‘ can we go to
the pictures?’ James has his license and drops Frank home afterwards. Social life not there
except for when James takes him to the pictures or pizza hut. James gave him the best birthday
21st present he had ever had — a special outing with animals.’
‘He has a friend who is a vet. Met Steve through another community volunteer matching
organisation. He had one weekend a month and that’s how that friendship started. Steve moved
away. Every time he comes back to town to see parents and friends he takes Frank out for the
day. Steve rings Frank and says ‘you work out what you want to do’. Steve kept in touch when
he went to Scotland for a couple of years.’
Ed’s family described how neighbours can become friends:
‘Neighbours when younger helped out. Now moved and still best mates, regular catch ups,
special events. As a young person he would pack his bag when he was going to leave home - he
was packing his bag to go live with them!’
d. About the role of social media
Several of the participants in this project used social media to keep in touch with friends and
family. Social media can keep people in touch including people who find communication
difficult in other ways. Here are some examples from Frank (See the full interviews in Part 2.)
Frank uses various media:
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Text: ‘I text to make him feel that someone is thinking of him.’ ‘Friends will send a text —
what are you doing Frank? ‘Text important to keep in touch. If something happens he will
send a video or a picture all on the text’. ‘Frank has all the staff mobiles and send them texts
regularly’.
Skype: ‘He can Skype, talk to us and see us when we are away.’
Facebook. ‘Uses Facebook. Try and protect from Facebook predators — no picture/ has a
dog instead.’
Phone. ‘Frank’s phone is his world. Without a phone he is just lost.’
Tweet: ‘He can tweet.’
What do you think is the place of social media building and maintaining social connections?
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What are the advantages and disadvantages of social media?
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Topic 3: What can I do? What do I bring to
a relationship?
3.1 What is this topic about?
Each of us brings something to social relationships. We also gain something from the interaction
with others. What each person brings is part of the foundation of the relationship. What each of
us brings includes what we are interested in, how we want to live our lives, our personality and
more.
a. What sort of a life do you want?
Knowing what sort of life you want is the first step to thinking about building social
relationships. Some ideas about deciding what’s important to you:
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Everyone’s idea of a good life will vary.
Natural supports and social relationships are more likely to develop in places with people
typical of the wider community.
The vision for how you want/ your family member to live, even from childhood, will set the
scene for whether these opportunities are more — or less — likely to happen.
b. What the project participants said
The people who felt well connected in this project knew what sort of life they wanted, and that
was the basis for different social relationships, For example,
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‘To do as much as possible. Normality.’
Didn’t want to spend all his time with other people with disabilities.
“A good life is a busy life”
‘Can’t be bothered sitting around home.’
‘When you want something you go and get it.’
Elly said:
‘I’m prepared to try things; I can tolerate knockbacks; I don’t want to rely on others; I will seek
help if needed; ‘don’t smother me’ message to staff; good understanding of ‘want to do as much
as I can;’ importance of taking responsibility; creates opportunities.’
The Consumer Advisory Group said, in response to ‘What makes a good life?’ said:
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Well balanced with work and rest
Community activities
Keeping occupied
Good food, good entertainment
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Physical, mental health
Relationships, engagements, work, play, having interests
Goals to achieve: reason to get up and get on. Stable. Depends what’s on for the day.
Something to get up for. May sleep in 9/10 am, wake up early, and have things to do or be
bored. Recreation.
Good sleep, access to resources, basics in life, somewhere to live, food.
Transport, important to get to and from when not much public transport.
Income, employment, volunteering.
Medical support
Stress reduction strategies, e.g. meditation, relaxation.
Read the full interviews in part 2.
3.2 What is your opinion?
The following examples from Louise and Frank describe situations where each person knows
exactly what they want from social connections — that was the starting point.
a. Louise: Being socially connected doesn’t have to mean close relationships
Louise described her enjoyment about being in the gym, feeling included, sharing a common
goal of training with many people, but not wanting to be friends with people.
Summing up Louise’s experiences:
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People can feel included in settings where people share a common goal, but don’t necessarily
connect at any deep level.
Despite being little in contact with neighbours there can a connection through expectations to
notice the unexpected or unwanted, while maintaining privacy.
(What makes it a suitable environment) You don’t have to develop relationships with people,
that require maintaining or ongoing support, and I can choose the level of interaction but I
am still socially included.
Not everyone likes groups
Many groups based on common interests have options for how much social interaction
people want.
It’s possible to feel supported but not through talking — sharing a common experience
Pets can be important as social bridges
Early experiences are important for later life interests and pastimes.
What is Louise contributing to the social relationships at the gym? What is she receiving?
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b. Frank is interested in animals — only!
Frank volunteers at an animal welfare organisation.
‘He doesn’t belong to any organisations — except animal welfare organisation - and it is the
animals that make this an ok group for Frank. He has all the staff mobiles and sends them texts
regularly. Goes to animal welfare organisation 3 days per week people - out there they are more
his age — the young workers.’
What is Frank gaining from being socially connected? What is he giving?
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Topic 4: What can families do?
See the poster: ‘Being a local matters’; ‘Ideas for parents’
4.1 What is this topic about?
Families can assist their family member to be part of the community in different ways which
encourage social relationships. (It is recognised that for some people, family will not be closely
involved).
a. Adult social networks can start in childhood
From the interviews, the foundation for community connections and friendships could often be
traced to childhood: family, mainstream school, early development and experiences. The families
who look for more friends, connections probably look for and find more connections for their
children.
Too often the emphasis for children is skills alone. Many families only start to think about social
relationships and connections for 18 year olds. This misses opportunities good supports and
resources to facilitate relationships from an earlier age. Young people can have great skills and
independence because of earlier learning but may be very isolated if relationships haven’t been
progressively developed.
For many people, early experiences may have been interrupted or life may have changed. People
with a mental illness may have had good early experiences and relationships prior to their first
episode. Recovery is about re-making those connections.
b. What did we learn from participants in the project?
How families can help
For many people with disabilities involvement with family will be important for helping social
relationships get started. Families can assist people to get started, to develop skills, to have a go,
to problem solve, and to link to other people and experiences. As Ed said in the interviews:
family and friends ‘stick up for you’. Ed’s family also were a ‘back up’. ‘Mum and dad, one
younger sister. Uncle and Aunties I see around town. If I need them for anything I will talk to
them. If needed something they would help - I rang Pa at 11pm at night because I had forgotten
my key to get into the house.’
This backup role was reinforced by others, as follows: ‘family/ close friends — first port of call.
First to let person know — you are not well. Family can step in to support and care for person’s
children, school, lunches, transport’ (Consumer Advisory Group).
Frank’s family built on Frank’s interests and developed his skills and independence:
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‘Frank loves animals. We built on that. Autistic —parallel player happy to be by himself as long
as he can contact someone. Doesn’t like girls. He can’t plan — organisation is not one of his
list of skills, can’t multi-task. Animals are what he is interested in. His is quite happy to stay on
his own overnight now - we are able to get away for the night. Has his own debit card and is
able to make his own purchases from shops.’
Frank’s family was very involved in the community and ‘setting the scene’ for Frank to develop
social relationships. This included ways that family members contributed to community groups
and encouraged the development of Frank’s skills and independence.
‘Family were very community focused. Importance of mainstream school for community
connections especially pastoral care program at Catholic College. Parents put in a lot at school
e.g. tuckshop, volunteering etc’.
‘Social outings — father’s job to take him to the pictures.’
‘Let him walk around the block by himself, let him stay overnight by himself. Encouraged him to
walk from school to the market place. I used to ring him and say don’t catch the bus home.
Meet me at the market place. A massive thing — the independence of it.’
(Read the full interviews in Part 2).
Some people find it very difficult to be with others and might need a hand. This is when family,
friends or staff may be helpful to ‘stick up for you’.
But family can’t always help
Families can be important but not in all circumstances or for everyone. Not all family members
want close relationships with each other.
See the interviews with the Consumer Advisory Group, for example:
‘Families not always in the picture or don’t think they can do anything to help. Person doesn’t
always accept mental illness.’
‘Person doesn’t always accept help from family especially if there are issues. Importance of
knowing boundaries — when and where to provide support — when to leave alone.’
‘Family might offer misguided support — may be counterproductive — not understanding or
having knowledge how they can help.’
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c. Who can families trust?
It’s all about trust. A worker, and therefore the organisation, will be trusted as a consequence of:
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Being reliable
Using sound judgement
Maintaining confidentiality
Having the confidence and skill to act in the best interests of people who trust them and make
good efforts to follow through on what was agreed (Turnbull et al 2011).
4.2 What is your opinion?
a. What’s happening for your family member?
The following can create conditions where social relationships may form. Discuss your answers
to the following questions.
Does your family member spend time with:
Yes/No/maybe?
People their own age?
Doing things people of their age do generally in the community?
Other people with disabilities in community places?
Other people without disabilities in community places?
b. Are some things always worth a try?
Do social relationships forming depend on an individual’s independence? Some families doubt
different ideas for building social relationships because their family member can’t ever do these
things independently.
Is it worth trying to build social relationships based on something which depends on paid or
unpaid support? Why do it?
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c. What are the roles for families?
What roles do you have as a family member?
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Back up when arrangements fall through.
For ideas or vetting ideas.
Supporting greater independence.
Networking, and contributing.
Modeling how the family wants the community to be.
Does it mean families have to do all of this alone?
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Topic 5: Ideas for joining a community
group
5.1 What is the topic about?
Deciding to join a community group doesn’t just mean picking the first group or activity you
notice. Think about what’s important to you. Find a group that matches your interests and your
contributions. See how welcoming the group is.
a. What do you contribute?
What the Consumer Advisory Group said:
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Think about what you bring to a group.
Look around the community for a match between your interest and abilities and a group.
Contribution is important to be a group member.
Recognise there will be ups and downs in group membership.
Think about what to do if the group doesn’t work out for you.
Thinking about the future — think about the long term. What may joining the group lead to
down the track? Will you be at the group in 3 years? What can you get from the group?
The first steps to joining a group include:
‘Look for people’s strengths and talents and foster these in groups.e.g. neighborhood house set
up a team in sports competition. Also considered: CWA, Arts clubs, CWA knitting, mosaic
groups with friends; U3A’.
‘Knowing what you want. Is it Cards club, Song writing, Poets group, School Council
Committee?’
Do you know what you contribute? Contributions can come from physical presence,
membership, specific skills or personality, for example,
 Composition skills, knowledge of mapping topography; artistic ability; cards; music festival:
mosaic tiling stepping stones.
 Life drawing group: other artists and gallery. Exhibitions, Artwrap (continuing ed), build a
folio, social event. Drawing classes.
 Mental health education in schools/ council/ community forums and talks.
 Captain of sporting team.
 Time keeper, secretary.
 Role model.
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b. Being in the right place, rights times for natural support
Main messages:
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Start with what you want, what you are interested in
Natural supports are not placements — suggestions about where to go, who with and to do
what arise from each individual
You cannot create relationships — you can create conditions for relationships.
5.2 What is your opinion?
Read about the experiences of the following people. The full interviews are in Part 2. What can
you learn from each description? Have you had similar experiences?
a. Ed: Footy fan and volunteer
Ed does enjoy watching the footy. He has been down to the footy AFL but not for a while now.
He barracks for Carlton. Ed does the local footy clubs stats of how many kicks and hand passes.
This all started from Dad’s contacts. Dad played with this club but Ed made the approaches after
he had been out there watching the guys for a long time. ‘Last year I spoke to a couple of the
guys/ coaches and said that I wanted to help out. I knew the guys by hanging around the club
and getting to know them. The club guys are friendly and I hang out with them at other times.’
Ed used to be at another footy club because of friends he went to high school with and his uncle
coached. But, he ‘felt like he needed a change, so moved clubs’.
Ed has also been involved with two other groups, but has discontinued these. ‘I’ve moved on
from that … but have memories of that.’
b. Finding a welcoming group — a church which wants to be inclusive
Leadership is critical to developing an inclusive culture.
Different people have different responses to being welcomed. Being flexible is important.
‘I think, you have to be careful about being so welcoming and so inclusive, if you are an
introvert like I am as I said you know, the first time I went there, there was about 3 or 4
different groups of people officially welcome me that wasn’t counting the ones that smiled.’
Being too welcoming can be overwhelming for some. ….’so you do have to be able to give
people space too … not overloading people by being too welcoming I guess.’
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It’s important to be aware of others feeling and reactions. Things like: ‘being very gentle with
people, speaking softly, maintaining you know a sensible distance from them, making sure
people are comfortable and not pushed into more physical contact — like a hug.’
Find practical ways to be welcoming. ‘Host teams are responsible for making people feel
welcome that day. Host teams find out who is new, make introductions, find out where people
prefer to sit, who with and provide information — even umbrellas. If it’s raining you co-opt the
little kids to take umbrellas out to the car park so that people getting out of cars don’t get wet.
Kids love that.’
c. Anthony and finding the right club
Anthony wanted to join a club. He had played tennis and badminton since childhood. ‘I was
looking for some physical exercise but nothing too strenuous. I knew the people at the
community centre who were playing badminton. It was not a badminton club where I did not
know anyone.
I met with one of the people from the community centre to go to badminton club the first night. I
played a game that night. I had played badminton at school so I was not unfamiliar with the
game and I felt confident about joining the club because I knew about badminton.
Other people who I knew played badminton encouraged me to go to the club. They said it will be
good and you will enjoy yourself. They were also going to be playing’.
Initially the club was a good fit for Anthony. ‘It started as a good fit with the club. It occupied
the time and I concentrated on playing badminton and enjoying the activity. I got along fine with
the other club members. There were a lot of people there who were younger than me and it was
mixed men and women. They were a diverse group.
I was treated in a respectful way by other members. I didn’t feel excluded. There were no signs
of exclusion or barriers that I had to get over. It was a stress free environment for quite a while.
Nobody told you what to do.
Eventually Anthony realised this club did not emphasis what he wanted. ‘It was not a social
group, the focus was on badminton. There was no time for socialising, it was just into
badminton and playing. People usually went home straight after the games. The hall was cold
and people didn’t want to stay, especially on winter evenings’.
d. What Esther’s experiences tell us
Esther tried different community groups depending on what she was interested in. We learned
from Esther that:
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There are lots of activities and groups in each community.
Find what you are interested in.
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It’s possible to find out what’s on from other people, notice boards and the local paper.
Not everything is long term. Be part of what suits.
Being in a small community has meant seeing the same people in different places: this can
make it easier to get to know people… and there is less travel between things.
Some communities and some groups do know how to welcome new people better than others
do.
e. Lisa created a role for herself
Lisa created a role for herself. She thought she was telling others about disability. Others saw her
as a role model because of her confidence and ability to present to a group. In summary:
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Lisa created a role for herself with community groups.
Lisa has many skills and has learned more through being a presenter.
A sense of humour can often get though situations when people are anxious or little
organisational things don’t quite work.
Other people recognise what Lisa is good at — not her disability.
Lisa has been a role model for others giving them confidence to speak up.
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Topic 6: Quick tips — do’s and don’ts
See the poster: ‘Being a local matters’
a. Do
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Do see building social relationships as important.
Do allow time for relationships to develop depth.
Do build ‘give and take’ into ideas for relationships in the community.
Do keep communication open and shared. Keep everyone talking: family, individual, staff
and community members.
Do problem solve. Things change.
Do support roles with contribution at the core: like fan club member, bird watcher, or family
member who has responsibilities.
Do think about the community as an experience — not a place.
Do find ways to do things that don’t depend on money.
Do think differently. Do recognise there is an endless range of interests, pastimes, hobbies
and vocations in the community.
Do find what people can do now.
b. Don’t
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Don’t assume families or individuals have to do everything — or nothing.
Don’t concentrate on skills and forget relationships.
Don’t risk limiting the ideas available to individuals and families.
Don’t rely on ‘one offs’ and variety as a basis for building relationships.
Don’t support roles where the person is passive.
Don’t think of natural supports as a way to save on paid supports — they are different.
Don’t think there is a directory of ‘natural supports’ that people can ‘slot’ into.
c. What was learned from interviews about helping relationships gets
started?
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The importance of being welcomed and a sense of belonging with a regular group or an
informal gathering or public venue.
Having the same priorities Networking/ community connection was a high priority for
family/ individual and neighbourhood group.
Being mobile helps — either by bike, scooter, public transport, private transport — a lift
from others. Being able to ask someone for a lift is one sign of being part of a group.
It’s not about money and always doing more! Our contributors give examples of different
ways meeting people — not only about doing more and more. The individual or family can't
do this alone.
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Relationships have highs and lows — relationships are not static and can be stressful,
distressing as well as reassuring and beneficial.
Trust matters. Individuals and families need someone to trust before being able to keep
information building about possibilities.
Be ready, be opportunistic, look for many different ways. Relationships don’t always
happen is a planned or logical way.
The importance of contribution. Everyone contributed to the community group, friendships
or social relationship. What was contributed wasn’t necessarily the same as what was gained
or appreciated in the relationship.
Many people will be getting support from different professionals and organisations.
Sometimes it is what staff or family do that helps or blocks people forming relationships
with others in the community.
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PART FIVE: REFERENCES
The literature supports themes identified from the interviews. This is not a comprehensive
literature review about natural supports and social connectedness.
Amado, R. (1993a) Loneliness: Effects and implications, In A. Amado (ed) Friendships and
community connections between people with and without developmental disabilities, Baltimore:
Paul Brookes, Chapter 4.
Amado, A. (1993b) Working on friendships, In A. Amado (ed) Friendships and community
connections between people with and without developmental disabilities, Baltimore: Paul
Brookes, Chapter 16.
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Amado, A. (1993c) Steps for supporting community connections, In A. Amado (ed) Friendships
and community connections between people with and without developmental disabilities,
Baltimore: Paul Brookes, Chapter 17.
Bigby, C., and Fyffe, C. (2009) An overview of issues in the implementation of individualised
funding. In C. Bigby and C. Fyffe (eds) Achieving their own lives: individualised funding for
people with intellectual disability. Proceedings of the Third Annual Roundtable On Intellectual
Disability Policy. Bundoora: La Trobe University.
Bigby, C., & Fyffe, C (2010). More than Community Presence: Social Inclusion for People with
Intellectual Disability. Proceedings of the Fourth Annual Roundtable On Intellectual Disability
Policy. Bundoora: La Trobe University.
Bigby, C., and Wiesel, I. (2011) Encounter as a dimension of asocial inclusion for people with
intellectual disability: beyond and between community presence and participation. Journal of
Intellectual and Developmental Disability, 39, 4, 263-267.
Bjarnason, D. (2002): New voices in Iceland. Parents and adult children: juggling supports and
choices in time and space. Disability and Society, 17, 3, 307-326
Department of Health (2011) Victorian recovery oriented practice, Melbourne: author.
Etmanski, A. (2004) A good life for you and your relative with a disability. Vancouver: Planned
Lifetime Advocacy Network.
Fyffe, C., McCubbery, J., Frawley, P., Laurie, D., and Bigby, C. (2004) Self advocacy resource
unit. Model development report. Disability Services Division
Kendrick , M. (2008) Key dimensions of quality In individualised lifestyles and supports,
Interaction, 22/4'09
Klees, J. (2005). Our presence has roots. The ongoing story of the Deohaeko support network.
Toronto: Resources supporting families and community legacies inc.
Klees, J. (2013) Stories of possibility: Building a context for relationship. Workshop materials
Australia 2013 janet@legacies.ca
Lutfiyya, Z. (1993) When ‘staff’ and ‘clients’ become friends. In A. Amado (ed) Friendships and
community connections between people with and without developmental disabilities, Baltimore:
Paul Brookes, Chapter 6.
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Montclaire, A (2011). Friendship Really Matters: Exploring effects of Compeer friendships for
people experiencing mental illness, St Vincent de Paul Society, Box Hill, Victoria, Australia.
O’Brien, J. (2010). SSR: Supporting social roles. A second bottom line to services for people
with disabilities. Toronto: Inclusion.
Shakespeare, T. (2006). Disability rights and wrongs. New York: Routledge
Reinders, H. (2002). The good life for citizens with intellectual disability. Journal of Intellectual
Disability Research, 46, 1-5.
Salmon, N. (2013) ‘We just stick together’: how disabled teens negotiate stigma to create lasting
friendship. Journal of Intellectual Disability Research, 57, 347-358
Traustadottir, R. (1993) The gendered context of friendships, In A. Amado (ed) Friendships and
community connections between people with and without developmental disabilities, Baltimore:
Paul Brookes, Chapter 7.
Turnbull, A., Turnbull, R., Erwin, E., Soodak, L., and Shogren, K. (2011) Families,
professionals and exceptionality. Positive outcomes through partnerships and trust. Pearson,
Upper Saddle River NJ. 6th ed.
Uditsky, B. (1993) Natural pathways to friendships, In A. Amado (ed) Friendships and
community connections between people with and without developmental disabilities, Baltimore:
Paul Brookes, Chapter 5
Wilson, N., Bigby, C., Stancliffe, R., Balandin, S., & Craig, D. (2013) I thought it was going to be
a lot harder. Community mentors supporting social inclusion IASSIDD conference presentation,
Halifax
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PART SIX:
POSTERS OR TIP SHEETS
The attached posters, or tip sheets, were developed to complement the resources materials. There
is scope to make several more posters from the information gathered in this report. At this stage,
the following topics have been presented in posters, or tip sheets:
Staff — are you a bridge to the community?
This poster outlines a role for all staff to provide a bridge to the community to facilitate the
formation of social relationships.
Getting started — how to connect with your community
This poster explores how to connect to your local community.
Ideas for people who are ready to extend their social relationships
Steph’s story
Steph’s story shares how a 21 year old woman with a disability made some changes to her life to
support her in going from feeling lonely and isolated to being connected. This story is not based
on any one real person, but is drawn from the real comments made by the people with disabilities
who shared their time and experiences with the creators of this project.
Ideas for parents
Parents and other family members can play a big role in linking people to the community groups
and settings they are interested in and where relationships are more likely to occur.
Forming relationships
This poster explores why relationships with others are important.
Staff advertisement
This poster is presented as an ad for staff and outlines how staff can work to support social
relationships — whatever their role.
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PART SEVEN: APPENDIX
Project design
The introduction of the NDIS will provide individuals and their families with increased
opportunities to choose and purchase supports which best meet their needs. As a result, this will
need to include alternatives options to the traditional delivery of services, which enable access to
a community life through the support of natural supports.
Presently, Disability Services are often unable to provide access to natural supports beyond paid
‘disability group supports’ or ‘individualised supports’. As a result, in Regional Victoria many
adults with disabilities (and often their families) are isolated, lonely, disconnected in their
communities, dependent on disability supports and immediate family. The project will:
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Identify and document natural supports such as clubs, community organisations,
volunteer groups that could include people with disabilities
It will scope the support that these organisations need to success fully include people
with disabilities
The project will resource the disability sector with the above information.
This project will provide the service delivery system with the information that they need to tap
into strong natural supports.
a. Project Goal
To promote the positive inclusion of adults with disabilities in their local communities
b. Objectives
 To support and educate individuals, families/carers and the service system, to identify,
build and sustain natural supports around the goals and aspirations or the people they
work with.
 To strengthen local, natural supports to embrace the participation of individuals with
disabilities through education and training.
 To develop the disability sector as mentors to strengthen natural supports.
Ideas for people who are ready to extend their social relationships
c. Target group
Individuals, residing in the Loddon Mallee Region between the ages 18-35 years, and their
families/carers.
d. Interventions
Individual and family/carer involvement in the project will achieve the following:
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Five individuals with disabilities (including psychiatric disabilities) and their families
and carers, wanting to engage natural supports within their local, mainstream community
will be identified and engaged in the project development.
Consult with individuals, their families/carers about their fears and vulnerabilities in
engaging natural supports; as well as the resources and interventions required to
overcome these and achieve their vision and goals.
Support these families with the knowledge, skills, and strategies and establish natural
supports in their local communities.
Strengthening natural supports:
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Map the Loddon Mallee Region to identify natural supports interested in supporting the
inclusion of people with disabilities e.g. clubs, groups.
Identify the strengths and needs of these natural supports, including the knowledge and
resources that would benefit their practice.
Create, develop and deliver training to natural supports, identifying a range of inclusive
practices and strategies.
Disability Sector Workforce and Organisations:
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Create and share project findings demonstrating successful planning that sustains the
membership of people with disabilities in community organisations.
Demonstrate methods of effective communication and collaboration with individuals and
families/carers to reach successful outcomes with these organisations.
Provide examples of how to build positive relationships between the disability sector and
natural supports.
A package to educate and train staff throughout Loddon Mallee Region to facilitate
inclusive practices within community groups and advocate for the value of building
natural supports.
Individuals with a disability, their families/carers will be involved in:
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Creating and developing the individuals’ vision and goals to inform selection of natural
supports
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Using individual ‘skills capacity’ audits which details the skills, needs, supports and
contribution for inclusion that will inform the development of the work of this project so
that it has broader application to individuals, families and carers in this region.
Consulting with GCSS to identify fears and vulnerabilities about using natural supports
and resolving ways to overcome these.
Receiving supports from GCSS to develop confidence in relaying their needs, activating
their goals and discerning quality services
Focus group discussions about what the ‘right match’ is for the individual and the natural
supports.
Production of a inventory of natural supports, that reflects the in-put of individuals and
their families and carers, that will be made available to disability services, individuals,
families/carers
The inventory will include strategies for disability sector to mentor natural supports if
required.
The role of Individuals, families/carers will be recognised through a financial contribution for
their time at meetings and/or respite services purchased.
Individuals and their families and carers will be invited to participate in the evaluation of project.
Method: what we did
Being socially connected is a subjective experience. This project aimed to describe the natural
supports of people with disabilities who feel they are socially connected and to learn from their
experiences. The project was undertaken between February and May 2013 in regional Victoria.
Experiences of individuals and/or their family members
The project centred on asking nine people with disabilities, who judged themselves to be well
socially connected, to describe their experiences. All of these people were working, volunteering,
participating, socialising, developing and contributing in different ways, with different networks
of people, in their local communities. The people involved in the project were young men and
women with a range of disabilities (such as mental illness, intellectual disability, ABI, physical
disability and autism) and four family members. People lived in settings including a large
regional city, small town and more isolated rural communities.
Interviews occurred during March to May 2013 and described:
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Who they identified as natural supports
What was important in the development and maintenance of natural supports
How people knew they were welcomed into different community settings.
The themes identified from the interviews have been linked to relevant research literature.
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The interviewers knew the individuals involved, which assisted the establishment of the project.
See later in this appendix for the interview guide and letter of invitation.
The write up of each set of interviews disguises people’s identities and the details of their
community involvement.
Experiences of community organisations
In addition, there were interviews with one community organisations to identify what they did to
be inclusive of all community members. See the appendix for the community group interview
guide.
Advisory roles
The project advisory group comprised members of the Consumer Advisory Group. Members of
this group contributed to interview material, reviewed the materials and advised the project staff.
There was a family advisory worker within GCSS who contributed and reviewed materials
particularly from the perspective of families. In addition, there were family members in some
individual interviews and the CAG.
Distribution
The materials developed from the project will be widely available through website and
conference presentations. A website to disseminate the material more widely is planned but
could not be completed within the timeframe for the development of materials.
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Ideas for people who are ready to extend their social relationships
Interview proformas and guides
LETTER OF INVITATION TO PARTICIPATE
Dear ……
I am writing to you and the person you support about a project, “Mapping Natural Supports” (
e.g. sporting clubs, shopkeepers, friends, employment, the neighbours, hobbies) that Golden City
Support Services has received funding from the National Disability Insurance Scheme Practical
Strategies.
I am inviting you and your family to share your experiences in linking to community supports to
assist in the development of information and strategies for people with disabilities and their
family carers to link to a range of community supports.
The commitment we are asking for is to tell your story about developing community linkages;
meet with the project workers four times; and to advise on the development of materials.
This a short term project and will be completed by the 30th April 2013.
A fee will be paid to participants and any travel expenses will be reimbursed.
I will follow up this letter with a telephone call to discuss your interest in participating in this
project.
Your consideration of this request is much appreciated.
Yours sincerely
Anne Fahey
Manager
Golden City Support Services
INDIVIDUAL INTERVIEW GUIDE
This guide was developed for those interviewing individuals and families.
129 Golden City Support Services (2013) — a FAHCSIA funded project
Ideas for people who are ready to extend their social relationships
Getting started
Before interviewing individuals and families:
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Check they are clear and reminded about the purpose of project and their involvement
and what that means.
Confirm confidentiality about their places of inclusion. The project will not describe
specific settings by name.
Describe the outcomes of the project; that they will receive the final materials.
Say why they will be paid for their contribution.
The following questions are to guide interviews with each individual/ family/ group about their
natural supports. While the questions have been arranged in to four themes, it is likely that
discussion will move back and forth between these themes. It may not be necessary to ask
specific questions as the issues and experiences may simply emerge from general discussion.
Themes to explore
Theme 1: Describe your (person with a disability) current social networks, natural
supports
Who are the people in the person’s life? That is, people who contribute to a sense of belonging
and familiarity in day to day life/ in the local neighbourhood and community by providing
assistance, information, companionship, recognition, friendship, interest in a common activity or
pastime. These people are different from staff who are paid to provide particular assistance at
certain times.
Think about people:
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Near to home (such as neighbours, corner shop).
As part of community and activity groups (such as church, sports club, hobby club).
Businesses and commercial settings (e.g. bank, supermarket, coffee shops, bus drivers).
Friends and acquaintances.
People ‘who know you and your family’ and say ‘hello’ (such as family friends).
This is not people who are paid to provide support, such as attendant carers or general
practitioner, although these people may be part of your life in other ways, for example, when you
see them at the pool or down the street and say hello.
Let’s make a list:
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You are a patron or customer at…….?
You are a friend, acquaintance, co-worker or neighbour of…….?
You are a member of which organisations or groups? (Etmanski 2004)
130 Golden City Support Services (2013) — a FAHCSIA funded project
Ideas for people who are ready to extend their social relationships
Other prompts:
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When you go down the street: who/ how many say hello, stop for a chat
What do you do with your neighbours: do you do for them? What do they do for you?
Who gives you a hand at the bank, supermarket, bus stop etc
Who notices if you are away from your usual commitments/ classes etc e.g. sick
Where do you spend regular time each week e.g. for 1-2 days — who are you with during
these times? Doing what?
Who would you contact of you needed a hand, some help — and family weren’t available?
E.g. if you were down the street — is there a shop you would go into or a friend to contact?
Who looks out for your family member/ you?
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Theme 2: What determines how these relationships/ networks operate/ what gets in the
way?
Summary description of this person:
o What does this person like/ dislike; have passion for; interested in
o Personality
o Contribution
o Other?
What is the pattern of community relationships — long term? Part of each week? How
long have these relationship/s been going on? How did it/ they get started?
Do these relationships lead to valued social roles/ identities? What role/ contribution does
the person make in these networks/ relationships?
What is the vision for this person in their community?
Are they connected to people who look out for them? Who are the people? (e.g.
neighbour etc)
What does the individual and family do to support relationships and community
connections.
Are people welcome/d in their community? Describe how people are welcomed — it will
mean different things to different people.
Who else is involved? Are people with disabilities also part of this network? Are they
part of the people who look out for each other etc
What do you do as a family/ individual to encourage inclusion
Has something gone wrong in any of these relationships — what happened? Did the
relationship recover, respond?
What happened when relationships didn’t continue? Could things have been done
differently?
131 Golden City Support Services (2013) — a FAHCSIA funded project
Ideas for people who are ready to extend their social relationships
Theme 3: What is the relationship between natural and paid supports? How does each
influence the other?
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What do paid staff do? What is the role for paid staff? How have paid staff or family
contributed to forming relationships: where to go, how often, to do what and with whom?
If staff weren’t there what would happen to these relationships?
Do family or paid staff ever ‘get in the way’? How? Why might this happen? (e.g. lack of
trust, feeling vulnerable/ unsafe, no sure others can manage, or?)
Theme 4: Reflection on what we’ve talked about so far
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Why does this person/ family have satisfactory natural supports?
What are the features/ characteristics?
Follow up questions
These questions were developed for subsequent discussions:
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What do the project participants do if lonely or bored?
Who does community networking if they can’t / won’t.
What are the barriers/ challenges to forming social relationships? What makes
community connection difficult? e.g. difficulty of asking versus being independent / self
sufficient; managing (fear of) rejection e.g. ‘can anyone give me a lift if it’s raining?’
What is in people’s individual support plans about social networking?
Give dome more detail or vignettes about what happens in social situations, such as down
the street or at the community house.
132 Golden City Support Services (2013) — a FAHCSIA funded project
Ideas for people who are ready to extend their social relationships
INTERVIEW GUIDE FOR COMMUNITY GROUPS
This guide was developed for those interviewing individuals and families.
Getting started
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Check community group members are clear and reminded of the purpose of project; why
they have been approached and what they are contributing to the project.
Confirm confidentiality about identifying too specifically:
o their organisation, as distinct from their approaches to welcoming people, and
why that is important.
o Individual people as distinct from members/ participants/ volunteers generally,
and why.
Describe the outcomes of the project; that they will/can receive in a final report.
Offer a donation to their group for their contribution.
The following questions are to guide each interview. It may not be necessary to ask specific
questions as the issues and experiences may simply emerge from general discussion.
Themes to explore
Theme 1: Describe the community group or organisation
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Describe the purpose, nature of membership/ participants/ volunteers, can anyone be
involved (are there any restrictions on members/ participants/ volunteers); what is asked
of membership/ participants/ volunteers.
Describe your current membership/ participants/ volunteers (e.g. by age, residential
location; typical pattern (e.g. monthly meeting, or weekly tournament) or length of
involvement (e.g. most people have been involved for 10+ years; or most people stay
involved up to about 2 years before they get a job again; other?)
How is your organisation funded — formally and informally: fees, effort in kind or fund
raising by membership/ participants/ volunteers; one off or ongoing government grant;
occasional self help funding; other?
How is your organisation governed? How are decisions made? How do people become
decision makers?
How would you describe the features of your group: e.g. we like to have fun; we want to
link to the community; we are a well established group etc or a word/ or phrase: well
organised, we get there in the end; we’re up to date; we get by week by week etc.
Theme 2: How do you welcome new people.. and keep them involved
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How do new people find out about you?
What happens when someone makes enquires?
What happens when someone first becomes involved?
133 Golden City Support Services (2013) — a FAHCSIA funded project
Ideas for people who are ready to extend their social relationships
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What keeps people involved?
What if someone has a query or a concern?
What do people do as part of joining your organisation? Are their responsibilities for
membership/ participants/ volunteers
How is being a member/ participants/ volunteers an advantage for someone (e.g. gain
confidence, get fit, opportunity to be given responsibility, different social group)
(How) is this different if someone says they have a special need (e.g. due to health,
mobility etc)?
Do membership/ participants/ volunteers see each other at other times e.g. are there social
events; do some people meet at each other’s houses or for a coffee; does your group get
involved with other community events?
Theme 3: What have you noticed and learned about different people being part of your
group when family or paid staff are also involved?
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What is the role for family and/or paid staff? What do paid staff or family do if they
accompany the person?
How have paid staff or family contributed to forming relationships in your community
group?
If staff or family weren’t there what would happen to other relationships within the
group?
Do family or paid staff ever ‘get in the way’? How? Why might this happen? (e.g. lack of
trust, feeling vulnerable/ unsafe, not sure others can manage, or?)
Theme 4: What have you noticed and learned about different people being part of your
group?
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Are there situations or characteristics of people which mean they are more likely to fit in/
to be welcomed by other members and/or take part in what the group can offer?
Are there situations or characteristics of people which mean they are less likely to fit in/
to be welcomed by other members and/or take part in what the group can offer?
What is it important that people bring to your community group?
Have you ever had to do something different or extra for some people — why? How did
it go?
Have you found any limits to what your group can do extra for someone? How would
you respond in these situations? Describe /discuss.
Has something gone wrong— what happened? Did the situation recover, respond?
What happens if it’s just not working for the organisation (e.g. someone is always late,
doesn’t seem to get on with others, or doesn’t stick to commitments)
What happened when people didn’t continue? Could things have been done differently?
134 Golden City Support Services (2013) — a FAHCSIA funded project
Ideas for people who are ready to extend their social relationships
Follow up questions about locating community groups
These questions were specifically for the Consumer Advisory Group.
If you were talking with consumers about using unpaid supports/community groups, what tips
would you give them about: (provide examples)
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Finding about groups/support in the community?
How can you tell if it is a good group/support for you??
What do you do when it’s not working for you?
What do you do when you have tried to make it a good fit and it is still not working?
What have you learnt about being in a community group?
135 Golden City Support Services (2013) — a FAHCSIA funded project