Submission 4263 — Ms Sally Richards OAM (Attachment 1) — NDIS Future Generations Bill

A Place to Call

Home

The story oF the Benambra

Intentional Community

Sally Richards and

Timothy West

May 2014

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A Place to Call

Home

The story of the Benambra The story of the Benambra Intentional Community

Sally Richards and Timothy West

May 2014

Getting a Life Family Governed Group 2014

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ISBN 978-0-646-92108-2

First published: May 2014

Citation

Sally Richards and Tim West (2014). A place to call home: The story of the Benambra Intentional Community, Getting a Life Family Governed Group, Canberra.

Contact details

Sally Richards

sally@jacksonwest.org

M: 0402 418 974

Price

$20.00 for organisations, businesses and government departments

$10.00 for families or people with a disability

Thank you

Janet Salisbury, Lisa Abbott and the team at Biotext, Canberra for editing and design work

Foreword

The Benambra Intentional Community project is a story of love, hope and commitment. It’s also about how something wonderful can be achieved when government and community take a risk on an idea and work together to achieve it.

My first involvement with the project came in 2004 when I met with Sally Richards to listen to her idea for her son Jackson to live independently in an environment where his rights were acknowledged and respected. Karen Connaughton and Cheryl Pattrick soon joined Sally to create the Getting a Life team — forming a formidable team advocating for a new accommodation arrangement that recognised their three sons’ right to not only independent housing but also a home.

I watched from a distance as these three women campaigned, organised and gathered supporters around them. Everywhere they went the momentum for this project grew. One of the strengths of the Getting a Life (now Benambra) Intentional Community project was that it was developed from the communities that knew and loved Jackson, Ben and Dan. The model wasn’t imposed from above, which would have required the young men to fit in, but instead it was crafted around their needs first, thereby giving it the very best chance of success.

As I watched this project develop over a number of years, culminating in the official opening in 2013 by the Governor-General of Australia, I have been inspired by the families’ work and dedication to secure for their sons what many of us take for granted. I’ve also been heartened by the ability of the oft criticised bureaucracy to work flexibility to deliver a new way of supporting families and people with a disability. The partnerships made with the nongovernment sector, in particular Hartley Lifecare, have also been essential to the overall success of the project.

This project stands as a shining example of what can happen when good people work together to create for three young men what sustains us all — a home and a community.

Katy Gallagher MLA

Chief Minister

ACT Legislative Assembly

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Contents

• Foreword

• A place to call home

• Author’s note

• Benambra Intentional Community: vision and values

• A neighbourly and welcoming place

• A housemate to share with

• Sustainable governance

• Key people at Benambra

• Jackson West and Sally Richards

• Dan Connaughton and Karen Connaughton

• Ben Pattrick and Cheryl Pattrick

• Overview of Benambra

• Physical structure

• Community structure

• Administrative and oversight structure

• Financial arrangements

• In-home care and support arrangements

• The long road to Benambra

• Early days

• The Getting a Life project

• The idea

• Making the idea a reality

  Contents | 5

Construction of Benambra …………………………………………………………………………………………24 Selection of intentional community tenants ……………………………………………………………..24 Selection of non-intentional community residents ……………………………………………………24 The opening of Benambra and onwards……………………………………………………………………..25

Essential features of the project …………………………………………………………..27 Ownership of project by the three mothers ……………………………………………………………….27 Support of local government ………………………………………………………………………………………27 Partnerships and allies ………………………………………………………………………………………………..27 Regular consultation with all parties ……………………………………………………………………….. 28 Willingness to reconsider norms, assumptions and standard models ………………………. 28

Essential features of the community ……………………………………………………..29 Key principles of the intentional community ……………………………………………………………. 29 Location of the community within the city ……………………………………………………………….. 29 A diverse community ………………………………………………………………………………………………… 29 Community design …………………………………………………………………………………………………….. 29 Tenant selection …………………………………………………………………………………………………………30 Funding and finances …………………………………………………………………………………………………30 Community spirit and togetherness …………………………………………………………………………..30

A place for everyone to belong …………………………………………………………….. 31 Benefits of the Benambra Intentional Community …………………………………………………….31

Challenges and compromises ………………………………………………………………..33 Challenges …………………………………………………………………………………………………………………..33 Compromises ………………………………………………………………………………………………………………33

6  |    Contents

Safeguards ……………………………………………………………………………………………35 Jackson, Dan and Ben ………………………………………………………………………………………………….35 The individualised funding ………………………………………………………………………………………….35 The intentional community and the non-intentional community …………………………….. 36

A place to call home — our vision is realised ………………………………………..37

Acknowledgements and key relationships …………………………………………….39 The families ……………………………………………………………………………………………………………….. 39 Key champions ………………………………………………………………………………………………………….. 39 Other thanks ……………………………………………………………………………………………………………… 39

Appendix 1: Getting a Life family governance ……………………………………….40

Appendix 2: Timeline of key events ……………………………………………………… 42

Appendix 3: Speech by the Governor-General at the official opening of the intentional community ……………………………………….43

Appendix 4: The intentional community residents ………………………………..44

Appendix 5: Co-residency documents ………………………………………………….. 54

Contents       | 7

Everyone deserves a place to call home — a place where they belong, feel safe and can beA Place to Call themselves. Every parent wants their children to grow up and, when they are ready, to leave home and move into their own home. The Benambra Intentional Community — a unique residential development in Canberra — is that place for Jackson, Dan and Ben, three young Canberra men with a disability.

This paper tells the story of the establishmentHome of the Benambra Intentional Community from its inception to its completion. The story starts with the birth of three babies, each with a When people get a home of their own disability, moves to an alliance of the mothers you will see them flourish. The level of these babies, describes the formation of a family governed project — Getting a Life — of disability is not important. What is and culminates in the building of 25 homes important is the home arrangement that where the three young men live in a friendly helps people thrive. supportive community.

Michael Kendrick, Talks That Matter,

www.belongingmatters.org

8  |   A place to call home

Author’s note Jackson, Dan and Ben are lucky in that they were born in the 1980s when policy was changing and people with We have come a long way since the institutionalisation disabilities were starting to be seen as people first and of people with a disability was the norm. their disability second; when people with disabilities Deinstitutionalisation, with the promise of community were seen to have human rights and when the idea of homes and community living, was a positive theoretical a person-centred life increasingly became best practice. step but the reality did not match the promise. They are also lucky that their mothers were prepared to fight for them to have a life whose choice, quality Group homes became the solution of choice for policy and contribution more closely resembled that of their writers, governments, disability organisations and brothers. services. If you had a disability you were expected to live with other people with a disability — but the only thing These three men have rich, varied, contributing lives with you might have had in common with them was that you layers of safeguards. They have a wonderful organisation had a disability; you might not know or like them or have and people they have chosen to support them. Most any other thing in common. importantly, they have a home they can each truly call their own and each of them is thriving. It is a great leap to treat people with disabilities as people with their own rights, wants, needs and preferences. It is Sally Richards and Tim West a greater leap to ask them what they want and to place them at the centre of their own lives, their own homes (Mother and brother of Benambra and their own community. resident, Jackson West)

There is nearly always a tension between providing people with adequate safeguards and security of tenure, services and funding and giving people a real life with choice and control. Parents of adult children with a disability worry endlessly about who will care for their child when they no longer can, through either the frailty and disability that comes with ageing or through death. For many parents the fear that their sons and daughters would never find supported accommodation was and still is very real. Many parents in their 70s and 80s are still waiting for this peace of mind.

What’s in a name

In the planning stages of the project, we called our vision ‘The Getting a Life Intentional Community’. When the buildings became a reality, they were named ‘Benambra’ — from a list of names approved by Housing ACT for naming residential complexes.

Benambra is the name of a small town in the Victorian alpine region, not far from Omeo. The name is thought to be of Aboriginal origin, meaning either ‘hills with big trees’ or the more colourful ‘men spearing eels’.

Author’s note       | 9

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1

Benambra Intentional Community: vision and values

The Benambra Intentional Community is a unique residential development in the suburb of Phillip in Canberra, the australian capital territory (ACT). The values of the Benambra

Intentional Community

The development is a cluster of 25 units designed to house three young men with a disability within a community who have intentionally chosen to live near them. Each man has Residents demonstrate a belief in the vision andhis own home with a housemate — or co-resident — as their mission statements of the Benambra Intentionalmajor support. The combination of intentional community Community and in the benefits of this communityand co-residency is a powerful and effective way of ensuring to themselves and others.supported, independent lives for these young men.

Residents are committed to being good neighbours, A neighbourly and welcoming place getting to know each other by name, helping out with minor tasks that others might find difficult and An intentional community is a neighbourly, welcoming sharing resources such as gardening tools. place to live where residents respect, help and are friendly to each other and are committed to creating a community of support. Residents of the Benambra Residents are interested in being actively involved Intentional Community welcome and get to know new in their community and neighbourhood. and existing members of the community, and actively and willingly help others in the community by sharing Residents help others. their time, skills and resources with each other. Residents attend and contribute to community meetings, social Residents work cooperatively, collaboratively and events and occasionally invite others into their homes as harmoniously with others. part of creating a safe and inclusive community. Residents have elected to move into Benambra knowing that three young men with a disability are living there. All residents Residents make positive changes and implement welcome diversity and acknowledge the gifts and talents ideas for improvement. of each person. The structure of the Benambra Intentional Community is described throughout this document; Appendix 4 contains detailed information on how residents of Benambra were selected.

Benambra Intentional Community: vision and values     | 11

A housemate to share with

In the Benambra Intentional Community, each of the three young men has a co-resident or housemate. Co residency is a model of support where one or two people live with the person with a disability as paid housemates. The co-resident can be a single person, a couple in a relationship, a couple of friends, a single parent — there is no rigid definition of who can be a co-resident. In exchange for agreed duties the co-resident lives rent free, is paid an annual salary and has negotiated built in respite. Each co-residency position is individual and tailored to the person with a disability. The salary of the co-resident reflects the intensity and nature of the support needed by the person with a disability. The co residency arrangement at Benambra is described in detail in Section 3 and co-residency documents are shown in Appendix 5.

Sustainable governance

The Benambra Intentional Community was the ‘brainchild’ of a group of three mothers who joined forces to create a better life for their sons with a disability. In 2004, they formed a family governance group, which they called Getting a Life. ‘Family governance’, in this form, is a group of people with disabilities and their families who join forces to exert more control over the lives of the people at the centre of the family governed group. They are not typically incorporated and each family governed group is not necessarily like any other.

Common features of family governance can be that the families organise and develop their child’s life, including work, leisure and support. The administrative, fiscal and legal requirements are delegated to a host agency. In the case of Getting a Life, the host is Hartley Lifecare, which is an incorporated nongovernment organisation in the ACT. As our host agency, Hartley allows us to be autonomous in areas directly related to our sons but we work closely with Hartley in other areas. The Getting a Life family governed group has funding to employ a coordinator for 7 hours a week. Our current coordinator’s role is to develop and foster relationships within the immediate residential community and to make links in the local community and also in the broader community. This might include organising an intentional community barbeque, a house concert or a working bee; cooking meals for a member who is ill or incapacitated; or delivering muffins to a neighbour.

Further information about Getting a Life and Hartley Lifecare is in Section 5. The structure of the Getting a Life family governed group is shown in Appendix 1.

12  |   Benambra Intentional Community: vision and values

2

Key people at Benambra

Benambra is centred around three young men Jackson’s disability who have disabilities, Jackson West, Dan Jackson has Phelan-McDermid syndrome, which is a Connaughton and Ben Pattrick. Their mothers, micro-deletion on the long arm of the 22nd chromosome. He also has extra material from chromosome 1 co respectively, are Sally Richards, Karen located on chromosome 22. His condition manifests as a Connaughton and Cheryl Pattrick. profound intellectual disability and he needs full support in every area of life. He needs the 24-hour presence of a responsible person, such as a family member, friend, Jackson West and Sally Richards co-resident or other support staff. Part of his syndrome is disturbed sleep and this is the most difficult part of living with him. www.jacksonwest.org He is a generally happy person who is easy to have around. His emotional demands are few. He doesn’t have

Written by Sally Richards

any medical conditions such as asthma or epilepsy but Sally Richards is Jackson’s mother. She has been a has a low-grade autoimmune condition. He is gentle, disability activist, advocate and innovator for many years. loves music and driving in the car. She was a founder of the Getting a Life family governed group and established JACKmail — a successful courier business — for Jackson in 2007.

During the past 14 years Sally has presented at national and international conferences, worked on strategic priorities with government departments, worked with families to assist them to plan for the future and has been the family/community voice on boards, reference groups, panels and advisory groups. As a fierce supporter of the National Disability Insurance Scheme she spoke at the NDIS Congress in Melbourne in 2011.

Her latest joint achievement is the Benambra Intentional Community.

Key people at Benambra     | 13

Jackson’s upbringing Jackson hosts dinners and every time one of his brothers or a friend or relative is in town he and CR1 invite them Jackson was born on 1 January 1986 and grew up with for a meal. Sally loves going to Jack’s house for dinner or Sally, his father Mac and his three brothers: Tim, Duncan a visit and she also loves inviting him and anyone who and Lewis. He spent some years in shared foster care, is with him to her home for a visit or a meal. As well as fortnight about, due to serious illness in the family and this, CR1 and Sally try to make Jackson’s home a place of other stressors. music. He has hosted one house concert so far with more His early life was dominated by illness with many hospital to come and a Guerrilla Gig was organised with two local visits and several operations. He was not a happy boy for bands. His life is expanding as he meets the family and many of those years. friends of his co-resident and other support staff. He attended disability-specific pre, primary and high Jackson seems incredibly happy in his new home with the schools. He graduated at the end of 2006 and started support and care of CR1. work in JACKmail in February 2007. It has been a huge change for Jackson, for CR1 and for his mother, but they are all doing very well in their new lives. Current life and family relationships Sally reports that she has learned to ‘butt out’ quite a lot, to let go of the controlling reins and to allow CR1 to run the Jackson moved into his own home, number 13 of house in his way rather than in the way she would do it. Benambra, in May 2013 when he was 27 years old. He shares his home with his co-resident, CR1. ‘Jackson and I now have a more typical mother Part of the co-resident’s job description is to foster and son relationship, which is just the way it relationships within the community. CR1 and Jackson are generous hosts and often invite others for a barbeque. should be.’ Jackson and CR1 share their herbs and tools, water the Workcommunal vegetable garden, invite neighbours for a meal and are friendly to all. Jackson works in JACKmail, a courier business that his mother and father established for him in 2007. For the past 7 years he has worked every weekday morning from 8.30 am until 12.00 pm picking up mail from post office boxes and delivering it to business premises.

This work gives Jackson a legitimate place and role in the ACT business community; he is known and greeted by many and is busy and contributing to the Canberra community. His presence as a worker in the community changes attitudes towards people with a profound intellectual disability every day.

He has 4 weeks’ holiday a year when JACKmail closes down over Christmas and the New Year.

Leisure

Jackson is a busy young man and when he is not working has a variety of leisure activities. He goes to the gym — a fitness gym for some kilometres on the treadmill and a gymnastics gym where he does trampolining and balance work. He attends a music class, goes swimming, volunteers for the ACT library service and enjoys bushwalking and being a passenger on his tandem.

He regularly goes to the Tradies Club for dinner, is a member of a dinner club, Cuisine Team, goes to music gigs and relaxes at home with his jukebox and co resident. He often visits his mother on the weekends and hosts many dinners and barbeques.

14  |   Key people at Benambra

Dan Connaughton and Karen Dan’s disability

Connaughton Dan is an amazing young man who has defied the gloomy prognosis attached to him in the first years of his life. Dan Written by Karen Connaughton has trisomy 21 (Down syndrome). This means he has three Karen Connaughton, Dan’s mother, was fortunate to expressions of the 21st chromosome. Dan was very unwell have the opportunity to attend social role valorisation at birth and spent four months in intensive care before he training early in Dan’s life. Armed with this knowledge was discharged from hospital. On discharge, his prognosis Karen has worked to ensure people with a disability was poor. His family was advised that he was unlikely to have the life they deserve — a life of meaning and value. survive to his first birthday and if he did, he would be Along with others in the ACT community, she strongly severely disabled. advocated for, and worked with the ACT Government and Today, Dan, with 24 years of life experience, has skills and the Department of Education to develop a system that attributes way beyond what would be expected. He can supported the inclusion of students with a disability in read and write a little, catch a bus independently once mainstream schooling. As a result of this advocacy, Dan, shown, use the computer and make life choices (some and now many other students with a disability, have had good, some not so good). the opportunity to receive an education at their local school and college. Current life and family relationships Karen was the president of the Down Syndrome Until May 2013, Dan had been living at home with hisAssociation for two years and on the Board for four years. parents and brother, Sean. As Dan had attended the localShe also spent 10 years on the Board of Advocacy for schools he was well known in the neighbourhood but, inInclusion. During the past six years Karen has worked recent years, the neighbourhood has changed. Many ofwith Sally and Cheryl to establish the Getting a Life family Dan’s friends and acquaintances from school have movedgoverned group and Benambra Intentional Community. away and the families had downsized their houses. As aHer hope is that the Benambra Intention Community result, while Dan was known by the immediatemodel be one of many innovative housing options neighbours, his wider social networks were quite small.available for people with a disability. Given Dan’s difficulty in communicating, making new friends was quite a challenge.

Since the move to Benambra, Dan’s life has expanded considerably. He lives with his brother who provides both support and companionship. In addition, Dan receives some paid support through Disability ACT, and Home and Community Care funding. His parents call in every day to provide additional support and guidance.

Dan’s network of friends has increased enormously and he has benefited not only from the support and friendship of the intentional community members but also from the other residents in the complex. This new social network has increased Dan’s self-confidence and supported his ability to live as independently as possible.

Dan has also received considerable support from Jackson’s and Ben’s co-residents and in a very natural way has been included in the activities they are involved in. The modelling these men provide within the community has assisted others to better understand how to include people with disabilities in their everyday lives and Dan, Jackson and Ben are all benefiting from this.

Key people at Benambra      | 15

By living in his own place Dan has had the opportunity A get-together usually involves a game of cards with to host his extended family when they have come to whoever is keen to play and depending on the weather Canberra on work or holiday visits. This is extremely a game of soccer with some of the more active residents. important to him and he delights in inviting people to Dan is regularly invited to others’ houses and to stay. participate in joint social activities. He and his family have The south-side location of the complex has meant that organised working bees around the complex and this year Dan’s family and friends can call in and visit on a regular have registered Benambra in the Clean Up Australia Day. basis. It has also meant that Dan is reasonably familiar Dan enjoys having the ‘permission’ to walk around with the surroundings and the bus route. Benambra and talk to neighbours who are out and about. Dan’s confidence has grown over the past 7 months Work and will only increase as he gets to know the residents better and they become more familiar with hisDan continues to be employed by the National communication style.Convention Centre (NCC), which is a strong supporter and advocate of an inclusive workplace. However, by Dan The opportunity for Dan to live in a community of people moving into his own place, he has further cemented the who care about each other (unpaid support), and when view that people with a disability have the same desires necessary be supported by paid support, has made a and aspirations as other young people. Since May, a tremendous difference to Dan and his family’s life. number of Dan’s work colleagues have called in to visit Dan’s life is good — he feels valued and really enjoys him at home, play a game of cards and have a coffee — being part of ‘something bigger’. For his family, knowing something that never occurred when he lived at home Dan is safe and that they have people that can be called with his parents. upon at short notice if required is invaluable and made the transition from home to a more independentThe Executive Officer of the NCC and Dan’s immediate life a reality.supervisor attended the opening of Benambra, which was an extremely proud moment for Dan. It again validated the views of the NCC — that people with a disability should be supported to live a normal life that includes open employment and open accommodation.

A change as big as moving into his own home has put emotional pressure on Dan and as a result every effort has been made to keep 2013 as stable as possible in other aspects of his life. However, 2014 sees Dan recommence some study at the Canberra Institute of Technology, which he can walk to from home, and volunteering in Tuggeranong and Woden in addition to his paid employment at NCC.

The location provides great access to public transport, and coupled with the much appreciated support funding, all of these opportunities are now possible for Dan.

Leisure

Dan continues to participate in bowling and dance on a Saturday, and his variety in leisure opportunities has also expanded since his inclusion in the community. Since moving to Benambra he has had the opportunity to host barbeques, dinners, birthday parties and other festive celebrations. On Christmas day, Dan, with the support of his family, invited other residents who did not have any commitments over to dinner.

16  |   Key people at Benambra

Ben Pattrick and Cheryl Pattrick Ben’s disability

Ben was born with cerebral palsy, the eldest of identicalWritten by Cheryl Pattrick twin boys. Ben’s twin brother, Ryan, was stillborn due to Cheryl Pattrick is the mother of Ben. Cheryl has spent a twin-to-twin foetal transfusion at 32 weeks. Ben was the past 25 years gathering knowledge and experience delivered at 33 weeks by forceps; the probable cause of in disability and related areas to enable her to advocate Ben’s cerebral palsy is either the foetal transfusion at for a better life for her son, Ben, and for people with 32 weeks or the early forceps delivery. disabilities and their families. Being born with cerebral palsy has resulted in Ben having She has participated in numerous workshops, a severe physical disability. Ben is unable to walk or conferences, social role valorisation training courses and stand and needs support to sit upright. Ben has limited sat on several reference groups. Cheryl has worked in use of his hands and limbs and has a learning disability. the disability field in systemic advocacy and community Ben’s eyesight is poor and with his glasses on his clear development. vision range is only good for a few metres. Ben can talk but he can be difficult to understand at times. BenCheryl has been a member of the Getting a Life family requires full support in all areas of his life; he needs agoverned group since its inception in 2004. In 2008, she 24-hour presence of a responsible person such as a familybecame involved in the development and establishment member, friend, co-resident or other support staff toof the Benambra Intentional Community. ensure that his everyday and personal care needs are met. For 12 years Cheryl was a board member on the national Ben uses an electric wheelchair for his mobility,peak body, Children with Disability Australia, which independence, leisure and work. Ben has a caring naturerepresents children and young people with disability and with a wicked sense of humour and a friendly personality.their families. She also served a two-year term as deputy chair on the ACT Disability Advisory Council. Cheryl was a founding member and served an eight-year term on the Ben’s upbringing

ACT BLITS Advisory Board (Business Leaders Innovative

Ben was born on 15 May 1987 and lived with his mother Thoughts and Solutions). Cheryl, father Steven and two younger brothers: Matthew and Luke.

During Ben’s younger years he spent a lot of time going to appointments with occupational, speech and physiotherapists as well as other medical professionals.

Ben underwent several operations in his growing years to try and rectify the spasticity in his legs and muscles. Ben’s general health has always been good.

Ben attended a disability-specific preschool and primary school up until halfway through year 3, when he transferred to the local mainstream primary school close to home. Ben graduated from his local college in 2005 and started work at the Canberra Hospital in 2009.

Key people at Benambra      | 17

Current life and family relationships Leisure

On 22 May 2013, Ben moved into his own home in Ben enjoys going away on fishing and camping weekends Benambra. Ben’s home was built specifically to meet with his family and friends. Ben plays tenpin bowling Ben’s mobility and care needs while incorporating a very once a week and is a member of a bowling competition. natural and homely feel to the design. Ben lives with his Ben occasionally plays bocce with friends and goes co-resident, CR2. Ben interviewed several people for the swimming once a week. co-resident position and CR2 was his preferred choice. Ben is a member of the Southern Cross Club and the Ben moving into his own home at the age of 26 was a Hellenic Club in Canberra and occasionally goes out monumental change for everyone — Ben, CR2 and his for meals and functions. Ben enjoys playing games on family. His mother says that ‘as a mother, letting go of his phone and computer, going to the movies and your full-time caring role is not something you can do watching DVDs. overnight but it does happen gradually’.

Ben’s transition into his new home has been a fairly smooth process and his mother believes that much of this is because Ben and CR2 get on so well. In Ben’s words, CR2 is ‘a brother from another mother’. Ben also has a team of dedicated support people who work with him in all aspects of life.

Ben and CR2 often have friends and family over for dinner and are active participants in the local Benambra community. Ben still has holidays with his family, and Ben and CR2 go visit Ben’s family for dinner regularly. Friends and family will often ring or drop in to see Ben in his new home or invite him out.

Ben is now the ‘king of his own castle’ and has more freedom, choice, independence and responsibilities as do most young men his age.

Work

Ben started working as a mail courier at the Canberra Hospital in 2009. Ben’s job involves delivering mail from the mailroom to the wards and offices within the hospital. Ben initially started working on a trial basis with a full time support person who assisted Ben to learn his job and liaise with other staff in the hospital.

Ben is now a permanent part-time employee working 15 hours per week. In Ben’s words, ‘this will change my life’. Ben is now a valued member of the mailroom team and he has made many friends and work colleagues over the past few years. Ben now has a sense of purpose and responsibility; he loves his job and earning his wages.

Ben’s employment as a mail courier was the result of 4 years of negotiations, meetings and encouragement between Ben’s parents and staff at Canberra Hospital.

18  |   Key people at Benambra

3

Overview of Benambra

Physical structure

Benambra consists of 25 public housing residences in an inner south suburb of Canberra in the Australian Capital Territory (ACT). Most of the houses are two storeys and have two bedrooms. Ben has a three-bedroom single-level home, and Jackson and Dan each have a three-bedroom two-storey home. There are two other single-level three bedroom homes.

Benambra is located close to a shopping and business centre, a bus interchange, a shopping centre, medical facilities and community organisations. A location close to a hub of community activity and transport was vital, as was its proximity to each of the young men’s families, employment, friends and established relationships.

Community structure

Jackson, Dan and Ben were allocated their homes first. The other intentional community residents were then allocated theirs. The intentional community comprises 21 people in 10 houses interspersed among the development. The intentional community residents elected to live in the community and abide by the intentional nature of community and neighbourliness. The residents had to meet certain criteria and had to apply to be members of the community, as set out in subsequent sections of this document and detailed in Appendix 4.

The remaining 15 homes were then allocated to other families from the ACT Housing list according to standard ACT Department of Housing practices. We refer to these houses as ‘non-intentional community residents’ in the remainder of this document. Sections 6 and 8 describe the roles of intentional and non-intentional community residents.

Overview of Benambra     | 19

Administrative and oversight structure Financial arrangements

The ACT Government paid for the land and the As with all ACT public housing tenants, Jackson, Dan construction of the houses. The houses were and Ben pay rent that is based on a percentage of their commissioned by Housing ACT. They tendered AMC income. The co-residents do not pay rent as part of Architects to design the development and St Hilliers to their conditions of employment. The co-residents rent build. The units are now owned by Housing ACT, who is covered by a component in Jackson, Dan and Ben’s is responsible for maintenance and building insurance. individual funding support packages. The cost of utilities Jackson, Dan and Ben are head tenants and their names is shared equally and each person living in the house pays are on their respective tenancy agreements. Housing ACT for their share of food and consumables. is responsible for house maintenance, communal garden Jackson, Dan and Ben receive individualised funding from space and allocation of houses as they become vacant. Disability ACT and this is auspiced by Hartley Lifecare, Hartley Lifecare covers Worker’s Compensation, Public who is responsible for the employment of the co Liability and contents insurance. residents and all other support staff and administrative, Hartley Lifecare, a nongovernment organisation, fiscal and legal matters. This individualised funding provides the human resources and administrative pays for the co-residents’ salaries and other support for support and insurance needs, and works closely with Jackson, Dan and Ben within their homes. the family to recruit, train and evaluate the employees Jackson, Dan and Ben each receive other support that work with the individuals. Staff involved in the from other government departments, such as Home intentional community (co-residents and carers, etc) & Community Care and the Australian Government are formally employed by Hartley. They can be selected Department of Families, Housing, Community Services by the families or by Hartley in consultation with the and Indigenous Affairs (FaHCSIA), and block-funded families, and do not have to have a prior relationship nongovernment organisations. with Hartley. The following general principles underpin the employment of staff within the intentional It is important to understand the complex financial and community: support arrangements that enable each of these young men to have lives of choice, quality, contribution and• Staff must meet Hartley’s pre-requisites for control. employment.

•    Staff must follow Hartley’s policy and procedures.     Take Jackson as an example. He works five mornings a

week from 8.30 am until 12.00 pm. While the business• Any workplace relations issues are dealt with by earns money, his employment in JACKmail is contingent Hartley with family input. upon the business also receiving FaHCSIA funding to

•   Families are heavily involved in advertising for,                                                   employ a person with a disability in open employment.

recruiting, training and evaluating the employee. With the assistance of FaHCSIA funding plus the income

•   Jackson, Dan and Ben and their families have a       earned by delivering a service to ACT businesses,

final say on who gets hired. JACKmail provides support to Jackson for 24.5 hours a All residents of the intentional community are registered week — up until 1.00 pm four days a week and until as volunteers at Hartley. This ensures they are covered 3.00 pm once a week. by insurance for any volunteer work they do, and allows Jackson’s afternoon activities are funded through block them to receive information about Hartley and be part of funding to a disability service provider, which provides any volunteer celebrations. him with 10 hours of support per week. He also receives support from Woden Community Services, which is block funded to provide Jackson with support for 7.5 hours a week. An additional 4 hours per fortnight is provided by yet another block-funded disability service provider.

Dan and Ben have equally complex arrangements with different organisations and funding sources.

20  |   Overview of Benambra

In-home care and support arrangements component. As each of the young men has differing levels of need for support, this is reflected in the remuneration An essential part of the intentional community is the package. support that Jackson, Ben and Dan require to carry out Included in the support funding from the ACT their daily lives. Jackson and Ben use a co-residency Government is rent allocation for the co-resident. So ACT model of care, which has been adapted to the specific Housing gets paid rent but it doesn’t come out of the co needs of each young man. The model is described below. resident’s salary. Dan lives with a housemate who does not receive a salary While the co-resident lives in the house under a formal but lives with Dan rent free in exchange for agreed hours employee–employer arrangement, it is expected that the of assistance. This reflects the lower level of support that co-resident will view and treat the house as their home. Dan needs. It is a place where they can invite family and friends for All three young men require support due to their social occasions and pursue activities of their interest respective disabilities. While Dan is quite independent, (e.g. study, art, music, etc.) when not providing direct Jackson and Ben require high-level support due to their support to Jackson, Ben or Dan. more profound disabilities. Both require assistance with The home is a shared environment with only the all aspects of personal care. They require overnight bedrooms being private. The co-resident needs to be support and a 24-hour presence. However each of mindful of the head tenant’s right to privacy and vice them wanted to live in their own home and not in a versa. Others invited into the home, including family group home. The challenge was to find an affordable members of the head tenant also need to respect the way of supporting Jackson, Ben and Dan in their own privacy of all who live in the house. independent homes using the level of funding to which each young man is eligible, and which did not There is an operating office as part of the house, used compromise their wishes and quality of life. The co- by other Hartley Lifecare staff and family members who residency model, adapted from a number of models used provide support when the co-resident is not on active by support agencies in Perth, achieved this. support duty. One bedroom is set aside for these staff and family members. In this context, a co-resident is a person who shares the individual homes of Jackson, Ben or Dan. Jackson, Ben Through discussion and agreement with the respective and Dan are the head tenants of their respective homes, families and friends of Jackson, Ben and Dan, and as and the co-resident is invited to live with and support outlined in the individual duty statements, the co them in many life areas for a specified period. The extent resident has times during the week, some weekends of this assistance and support varies between each of the and some public holidays when they are not required three young men and based on their different support to provide support and are able to pursue other needs. (For Jackson’s, see Appendix 5.) interests, have a weekend away or study. As an example, Jackson’s co-resident has: The co-resident position is supported by appropriate

• 48 hours every 2nd weekend from 4.00 pm Fridaydocumentation including a job description, selection to 4.00 pm Sundaycriteria, duty statement, details of salary and conditions

  of employment. The co-resident position differs markedly • 2 evenings a week from 6.00 to 11.00 pm

  from a more traditional support worker role as this • Monday to Friday 8.30 am to 4.30 pm

  position is a ‘whole-of-life’ position. • 3 hours on alternate Sunday afternoons.

The co-resident is formally employed by Hartley Lifecare All of the respite is negotiable. A portion of the co but works to and with the head tenant, their family and resident’s salary is quarantined. This can be used at the other important people in the head tenant’s life. There is co-resident’s discretion to purchase extra respite or a period of probation. holidays. Any money not spent after 12 months, they The co-resident shares the head tenant’s home and is receive as salary. expected to be an exemplary housemate and, depending In relation to the day-to-day management and on the arrangement, to be responsible for cooking, expenses in the household, the co-resident is cleaning, shopping, transporting, monitoring the health of responsible for:

the head tenant, seeking medical assistance as necessary,                                                                   •  50% of gas and electricity expenses

giving medication, attending to personal care and

• 50% of the food billbuilding relationships. To acknowledge this contribution, the co-resident is appropriately remunerated through • the furnishings required to furnish their own

the provision of rent-free accommodation and/or a salary bedroom and bathroom

Overview of Benambra      | 21

• personal insurance (fire, theft, etc.) to cover the A key aspect of the co-residency position is building and

loss of any of their personal belongings maintaining relationships and fostering community.

•   the cost of repairing or replacing any furnishings      Because Dan is more independent, and in particular

or equipment that is damaged by the co-resident, does not require assistance with personal care, his co their friends or their families (this does not include resident has fewer duties and is termed a housemate. general wear and tear expenses). The housemate lives rent free in exchange for The following is negotiated between the co-resident, approximately 10 hours of assistance each week. This can the head tenant and their family/friends before be helping with shopping, cooking, cleaning, transport, employment: entertainment. The housemate is not expected to do any personal care. The housemate is not paid a salary.• parties

• sleepovers by friends and families
• pets
• alcohol consumption
• extra or unscheduled leave. The role of Hartley Lifecare in the lives of the three men and Benambra

By Eric Thauvette, Executive Director of Hartley Lifecare

Hartley Lifecare supports people with disability in their homes and in the community by providing supported accommodation, respite care and community support services. We encourage and support the idea of making people more independent and living their lives as they choose to.

At Hartley, we believe that the people who best know the individuals with a disability are usually their families and friends. They have been involved for years and are in a much better position to know the individual’s aspirations and needs and can assist them to exercise choice and control.

When the Getting a Life family governed group was formed around three individuals with disabilities, we welcomed the involvement of the families; this has resulted in the best outcomes for these three men with goals and future visions set by them and by those who care for them. Involvement from the families gave details of current needs as well as future needs.

For Jackson’s employment, his parents created a business for him: JACKmail. JACKmail is a very successful business delivering mail to businesses around Canberra for more than seven years. With the help of the family, Hartley has had the privilege of providing the support to Jackson though employing a driver/support worker since the beginning of the business in 2007.

Hartley is most successful in providing support when family is involved. In the cases of Benambra and JACKmail, the involvement of the families means that our employees are more committed, have a sense of involvement with the person’s longer-term goals and are more loyal to the family because they are supported by them. This results in lower turnover, greater commitment and higher pride in our employees’ work.

Hartley benefits from this model due to the results achieved for the individuals with disability as well as the positive influence it has had on the staff. Input from the families is crucial for Hartley’s assessment of the support and services we provide.

22  |   Overview of Benambra

4

The long road to Benambra

Early days a coordinator for seven hours a week and, in these early years, their coordinator would look for employment and Nearly three decades ago, the lives of three families were recreational opportunities; attend meetings on behalf of changed forever. To each of these families a son with a the group or accompany the mothers to meetings and disability was born and each family became immersed take minutes; visit Jack, Dan and Ben while they were out in all things disability. Their lives were, to a large extent, participating in community or recreational activities; and defined by having a child with a disability. Jackson West do research and write reports. (born 1986), Dan Connaughton (born 1989) and Ben Pattrick (born 1988) are the babies who have grown The ideainto the three young men who are the core tenants of Benambra. Over time, the group turned their thinking to homes and community. Each of the families started work on this at different times (one family as long ago as June

2002. and in different ways. Several years ago they put their heads together and decided that the Getting a Life group should continue to work as a team to create homes and community for their sons. There are many different types of intentional communities, only some of which are built around people with a disability. The ones the group learned much from were:

• Rougemont Intentional Community, Ontario,

Canada

• Pinakarri Intentional Community, Fremantle,

Western Australia

The Getting a Life project                            •   Juno Women’s Housing Co-operative, Ainslie, ACT

(women only membership)

In 2004, the families of Jackson, Dan and Ben became a       •   Somerville Ecovillage, Perth, Western Australia.

team. The mothers, Sally Richards, Karen Connaughton They also learned much about co-residency and and Cheryl Pattrick, were and continue to be the main building good lives from: drivers in establishing and maintaining quality in their

• Perth Home Caresons’ lives. In 2004, they established Getting a Life — the first family-driven family governance group in the ACT. • Lower Great Southern Community Living

Association

For several years the focus of Getting a Life was creating

• My Place, Subiaco, Western Australiagood lives for Jackson, Dan and Ben. The group focused on employment, recreation and building relationships • Vela Microboards Australia

  within their community. They secured funding to employ • Local Area Coordinators in Western Australia.

  The long road to Benambra | 23

The Getting a Life group were particularly inspired by the Construction of Benambra Rougemont Intentional Community in Ontario, Canada. They met with three of the Rougemont families and with The sod was turned in March 2012 and construction started Janet Klees, their coordinator, several times over several in February. The houses were finished a little more than a years and benefited much from their collective experience year later, in April 2013. Jackson, Dan and Ben were given and wisdom. the keys on 29 April 2013 and moved in shortly after. And so began the long business of selling the idea to ACT Ministers and senior ACT Government bureaucrats, Selection of intentional community garnering support and making the idea become real. (A truncated timeline of significant events is in Appendix 2.) tenants

In June 2012, letters were sent to 1400 existing Housing Making the idea a reality ACT tenants. The letters explained the intentional community, described the kind of people who might like The Getting a Life group first pitched the idea to senior to live there and invited them to two information sessions ACT Government bureaucrats through a presentation on to find out more and to ask any questions. Rougemont Intentional Community on 4 November 2004. The information sessions were held in September 2012. The first real supporter of the idea was the then Minister Getting a Life, Housing ACT and Hartley Lifecare held the for Disability, Ms Katy Gallagher. Mr Martin Hehir, then sessions and each gave a short talk about their role in the CEO of Disability, Housing and Community Services, and development. Ms Lois Ford, then Executive Director of Disability ACT, Interested people were given an application form. A panel were also champions and allies. of community organisation members and a representative The group continued to advocate on behalf of their from Housing ACT reviewed applications. Initially a family sons with the new Minister for Disability, Ms Joy Burch. representative was going to be on the panel but this did The group found her and her Disability Adviser Mr Neil not happen (see Section 8). Finch to be willing listeners and sympathetic supporters. Successful applicants were notified and invited to two Eventually, Housing ACT agreed to look into a serious social events, one in December 2012 and one in April concept proposal. 2013. This was so the new members of the intentional Finding suitable land in the centre of Canberra was the community, the families, Hartley and Housing ACT could biggest hurdle and this took some months. Eventually meet each other and start the relationships that would be Mr Peter Johns from Housing ACT discovered land close so crucial for the success of the community. to shops, buses and community facilities on the south Documents, brochures and forms used throughout this side of Canberra that was already zoned for residential process are contained in Appendix 4. development.

The allocation of land by the ACT Government to the Department of Disability, Housing and Community Selection of non-intentional community Services was approved in the first half of 2011 and residents Minister Joy Burch announced the building of the intentional community soon after. Residents of the other 15 houses in the community were chosen from the Housing ACT waiting/transfer list. The Housing ACT then engaged AMC Architects to design undertaking by Housing ACT was that all tenants would the development. The ACT Planning and Land Authority need to be supportive of the principles of the intentional approved the development application in November 2011. community and would be selected to create a mixed All through 2011, the group met with AMC Architects to community with sensitivity to the needs of Jackson, Dan refine and finalise the plans for the homes of Jackson, Dan and Ben and the cohesion of the community. Housing and Ben. ACT said that they would be specially selected as people wishing to help provide a community that is supportive, friendly and sensitive to the needs of people with a disability.

24  |   The long road to Benambra

The opening of Benambra and onwards

The Getting a Life (Benambra) Intentional Community was opened by Dame Quentin Bryce, then Governor-General of the Commonwealth of Australia on 20 May 2013. The speech delivered by the Governor-General is contained in Appendix 3.

Since then, the families, co-residents and intentional community members have actively worked to build community and establish relationships.

The intentional community members all know and greet each other. Some have formed friendships and relationships are being forged. Individuals regularly hold barbeques and afternoon teas. The community has held music events, working bees, several meetings and a Christmas party, and has participated in Clean Up Australia Day.

The three young men have grown in confidence and are enjoying their new lives, as members of a thriving community. The families of the men enjoy seeing their independence at the same time as knowing they are well cared for. For all concerned, the intentional community component has been a success.

The long road to Benambra      | 25

= a ae i aa Ni,

rye

|

The long road to Benambra

26 |

5

Essential features of the project

This section describes some features that were Partnerships and allies essential to the success of the project overall No-one achieves something as ambitious as this on their and that are certainly worth bearing in mind own. It is critical that partnerships are formed between for similar future intentional community individuals, and between families and organisations, families and government departments, families projects. and government, and families and nongovernment organisations. Ownership of project by the three Each individual and group is one piece of a mighty puzzle. It would not have been completed if any of the puzzle mothers pieces were missing. As time went on, more organisations and people became important (e.g. St Hilliers Building This project was conceived, initiated, negotiated and Contractors and the project manager, Mr David de Luca). driven by the families, who stuck fast to their philosophy and ideals. They worked for many years with many Mr Martin Hehir, then CEO of Disability Housing and people, groups, organisations and departments. They Community Services, and Ms Maureen Sheehan, then continue to work with their sons, their co-residents, Executive Director of Housing ACT, recognised the flatmates, support staff and the residents to develop what innovative quality and potential of the proposal and also was started, and to strongly embed the people and the supported the idea in principle initially and practically later. culture into the community. They continue to work with Ms Lois Ford, then Executive Director of Disability ACT, Housing ACT and Hartley Lifecare to circumvent potential encouraged the group to persevere. problems, and to ensure existing or arising difficulties and complaints are dealt with promptly. Hartley Lifecare has always been a partner with full confidence in the group’s ability to make their different and ambitious ideas work. Support of local government AMC Architects understood the concept of intentional community very quickly and spend many hours meetingThe Getting a Life group had its champions and without with the group, listening to them, identifying thethem the community would never have been built. ACT individual needs of Jackson, Dan and Ben, and redrawingLegislative Assembly Ministers for Disability Joy Burch plans to satisfy those needs.and Katy Gallagher listened to them, believed in them, supported them and ultimately made it happen.

Essential features of the project     | 27

Regular consultation with all parties with Housing ACT’s house practice, which stated that a person requiring full-time care was eligible to a two Meetings. Discussions. Negotiations. Compromise. bedroom house only. However, the three-bedroom Persuasion. Consultations. Problem solving. Writing. Re- requirement was developed as an innovative way of writing. More discussion. Re-writing again. providing cost-effective support to which Housing ACT agreed. These processes dominated the lives of group members

• The employment contracts for the co-residents.for many years and were particularly intense in 2012 as As described in Section 3, the co-resident model isthings were coming to fruition. The group met with all an atypical method of care that had not been used,partners and allies regularly and often. It was necessary in this form, in the ACT previously. The co-residentto have many meetings to work out the big-picture plans model required additional flexibility of the fundingand then the small-picture details. organisations and required Hartley Lifecare to produce Early big-picture discussions were about the difficulties a new employment contract. The position description of finding suitable land, how many units, the ratio of for Jackson’s co-resident is contained in Appendix 4.

  people with a disability to people without, how to select • Payment arrangements. The new model arranged to

the tenants and how many families to include in the pay the co-residents an annual salary and to pay the intentional community. relief staff per 24-hour block rather than paying them The small-picture details, to mention a few, involved per hour.

writing the values of the community, the expectations         •  Tenancy. Jackson, Dan and Ben are head tenants

of the intentional community members, the terms of and their names are listed as such on the tenancy reference for the panel members for selection of the agreements. This not usual practice for people with residents, the co-resident job descriptions, the duty intellectual disability.

statements for the co-residents and the memorandum                                                                     •   Selection of the residents. The choice of other

of understanding between Hartley and the Getting a Life residents for the intentional community was as family governed group. important as the choice of co-residents. The process is described in Section 4. Willingness to reconsider norms, It is important to emphasise that each of the above assumptions and standard models changes was at first thought to be either unlikely or impossible. However, each was also essential to the success of the community. While the specific roadblocksThe project required several changes to accepted faced by other communities will probably be differentnorms and standard rules and procedures within the to those faced by Getting a Life, the magnitude of theACT Government and nongovernment organisations. problem may be similar, and years of effort may beIt was absolutely essential during the development required to circumvent them.of Benambra that changes to these norms, rules and procedures were considered and granted. Specific examples of new models and arrangements essential to Benambra are:

• The location of the community. As described in Sections 3 and 6, Benambra was built in the centre of Canberra, in an area where no land for public housing was thought to be available. Finding this land took more than 12 months of concerted effort by the mothers and by staff from Housing ACT.

• The design of the houses. As described in Section 3, the houses for Jackson, Dan and Ben needed to have three bedrooms: one for the resident themselves, one for their co-resident or flatmate, and a third for overnight respite staff. Because the co-resident (in Jackson and Ben’s case) or housemate (in Dan’s case) live in the house permanently, it was not possible for them to share their bedroom with other support workers who typically stay only for one or two nights. The three-bedroom requirement was not compatible

  28 | Essential features of the project

6

Essential features of the community

This section describes the features essential their families in case of emergencies and close to their historical communities. to the success of Benambra. Such features are The difficulties in finding land zoned for residential likely to be essential in the development of any development on the south of Canberra held up the future similar intentional community. process for a couple of years.

A diverse communityKey principles of the intentional community The families of Jackson, Dan and Ben clearly stated from the beginning that this community would not The key principles, which underpinned the design and be a segregated and congregated disability-specific development of Benambra, were: community. They wanted a variety of people of different

•   The purpose of the community is to provide safe,      ages from different backgrounds with different family

guaranteed, lifelong housing in an inclusive, make-ups. They wanted it to be full of people who would friendly, respectful environment for Jackson, Dan welcome their sons and who would appreciate them for and Ben. the things they offer a community.

•    Jack, Ben and Dan had to be there first.                                                    The families had to continue stating clearly that if the

•   Others were invited to live there knowing that         proportion of people with a disability in the community

three young men with disabilities already had became too large then the inclusive and supportive been allocated housing within the complex. nature that they hoped to develop was likely to fail. The

•   Potential intentional community residents had to     community needed more people who could give time,

agree to a set of expectations and principles (see energy and resources than people who needed support. Appendix 4). If the balance of people living there became weighted towards people with a disability, then the informal• Intentional community residents had to register support for Jackson, Dan and Ben would inevitably be as volunteers with Hartley Lifecare for insurance eroded and the intrinsic purpose and nature of the purposes. intentional community diluted.

• Jackson, Dan and Ben were to be head tenants with their name on the tenancy agreement. Community design Location of the community within It was essential that the community design be the city compatible with the fostering of a safe and cohesive community, and with the specific life and care The location of the intentional community was vital arrangements of each of the three residents. Design and non-negotiable for the families. Jackson, Dan and Ben’ homes needed to be close to a bus interchange, close to shops and other services, reasonably close to

  Essential features of the community | 29

features considered, but not all attained in the final Funding and finances design, were:

•   The arrangement of houses. Ideally, the houses        For the security of independent supported living in their

would have been in circles or clusters that create a home, Jackson, Dan and Ben need guaranteed tenancy safe inner space, rather than in rows. through Housing ACT, which they have. They also need security of guaranteed funding at a level that enables• The location of the residents’ houses within the them to live with enough of the right kind of support community. Ideally, Jackson, Ben and Dan’s houses at the right time and in the right place (reasonable and would have been in the centre of the community. necessary support) and that enables them to exercise

•   Communal spaces. Ideally, an indoor communal                                                          choice and control over their lives.

space such as a small hall or function space would be present. Benambra has an outdoor communal The funding needs to remain individualised so that barbeque space. each of them can tailor their lives using the funding allocated to them. The co-resident’s salary reflects the• Fostering of informal interaction. Ideally, the level of support required by Jackson, Dan and Ben. Other community would be structured such that support staff are paid under Hartley Lifecare’s Collective accidental, informal interaction can occur. This Agreement. might be walking past another person’s house on the way to the mailbox, or having shared spaces between houses that are natural play areas for Community spirit and togetherness children from both houses. Everyone who lives and works in the intentional Tenant selection community is encouraged and expected to bring people into the lives of the young men and bring the young men into their lives. Therefore the line between work,The selection of the intentional community tenants family and leisure is blurred. Jackson, Dan and Ben, theis just as important to the community as its physical co-residents, housemates and respite supporters all invitestructure and location. The essential criteria for family and friends to dinner; they take Jackson, Dan andmembers of the intentional community were Ben to dinner with their families; they go on picnics andthat people who wished to live in the intentional barbeques together; and they are invited to Jackson’s,community needed: Dan’s and Ben’s families’ homes for dinner, as are

•   to be existing ACT Housing tenants of at least five                                                                   their families.

years There are few boundaries around who can visit the homes• to have an excellent tenancy with no record of or whose homes Jackson, Dan and Ben visit. No-one has domestic violence, alcohol or drug abuse, police to get permission to drop in for a cup of tea, mix their involvement, non-payment of rent, vandalism, work with pleasure or leisure, or to invite Jackson, Dan or causing community disruption or disharmony Ben to dinner. It is a much more natural way of operating

•   to complete an application to live in the                                                  and it more closely resembles life in the non-disabled

intentional community world.

• to be selected by a panel of a Housing ACT Hartley Lifecare hosted getting-to-know-you barbeques employee and community members before anyone moved into the community. The mothers

  • to be prepared to sign on as volunteers of Hartley and co-residents initiate meetings, barbeques, morning

Lifecare teas and working bees.

• to have a ‘working with vulnerable persons’ check. A Benambra Facebook page and an email distribution The selection process for tenants was described in list has been set up so that everyone knows about social Section 4. This process, which required the tenants to be events, meetings or working bees. There is a community proactive, to attend information sessions and to apply to noticeboard to display information that concerns all be members, helped to ensure that only people genuinely residents (e.g. rubbish collection, maintenance or interested in, and appropriate for, the community music events). would apply. One of the mothers, Karen, prints out invitations inviting non-intentional community tenants to events such as the guerrilla gig, the Christmas party and the Easter egg hunt.

  30 | Essential features of the community

7

A place for everyone to belong

Everyone has found a place to belong in Benambra of their work and include them in family and community occasions and celebrations. All are professionally and everyone benefits. It is relationships that supported by Hartley Lifecare. enrich a life, safeguard people, create a place The residents who are part of the intentionalof belonging, and make a real community and a community … real home. … benefit because they live in a warm, friendly, supportive Generally people with a disability have fewer friends community. They benefit from the relationships that have and relationships than others and are less connected to developed and are continuing to develop. All have made their community. People with disabilities, their family, new acquaintances and friends within Benambra and friends and allies often need to intentionally create the all enjoy the many social and musical get-togethers that circumstances that foster relationships and inclusion. Benambra hosts. They have learned much about Jackson, Benambra goes beyond the rhetoric of community Dan and Ben and how they are contributors as well as inclusion and puts the rhetoric into practice. consumers. The intentional community residents give to Policy, procedures and regulations are important but it is the community and they receive from the community. the people who transform a place from a workplace to a welcoming place where all people have a valued presence. The other Benambra residents …

… who are not part of the intentional community benefit Benefits of the Benambra Intentional because they have good neighbours who work hard Community to physically maintain the grounds and garden, are considerate and respectful of other residents and are inclusive of all. They are invited to all the community Jackson, Dan and Ben … events and some have become part of the diverse life of Benambra. … benefit as they are now head tenants in their own ACT Housing homes with the reasonable and necessary The co-residents and support staff …support they need to fully enable choice and control over their lives. They have security of tenure and are … benefit because they work in a flexible, friendly, surrounded by people who have chosen to live with professional environment where the work–friend–family them in an inclusive community. They have many unpaid boundaries are blurred. They work with much support people who know and care about them, who greet them, from the families of the young men as well as from visit them, join them in social events and help them Hartley Lifecare. When they are ‘at work’ they are part of informally when needed. the community. This is supported by Hartley Lifecare who They have self-selected or family selected support staff has ensured that the select group of support staff who who have chosen to work with them. The support staff work with Jackson, Dan and Ben are experienced, have and co-residents place Jackson, Dan and Ben at the centre the opportunity to work with each of the young men, are

A place for everyone to belong     | 31

invited to attend all celebrations and are known by the at the Australian Housing and Urban Research Institute rest of the community at Benambra. Conference in Adelaide. The development was nominated for a Master Builders Award in April 2014.The co-residents are supported by a stable core of other support staff who each know Jackson, Dan, Ben, their Disability ACT …families and the co-residents well. They also know the intentional community members as they often attend … benefits as it is recognised for funding a unique model social events at the community. of supported accommodation.

Hartley Lifecare … The families … … benefits from their involvement in the intentional … of Jack, Dan and Ben benefit. They have the peace of community and through supporting families in such a mind that comes with knowing that their sons live in a unique and exciting way. Their involvement reflects well safe, friendly, supportive environment where they can on them as an organisation and helps them grow their exercise choice and control over many aspects of their expertise and their confidence in working differently lives, and have the reasonable and necessary supports to (see below). live enriched, contributing and independent lives.

Housing ACT …

The suburb … … has benefited from the recognition they have received … benefits in having a great residential development asfor their courage in developing something new and part of its community. The broader suburban communitycommitment to seeing the project through to completion. know that Benambra is a quiet community with tenantsIn 2013, the department won a Real Estate Institute who have pride in the physical environment and who doAward and jointly presented a paper with Sally Richards not create disturbances or upset community harmony.

Benefits for Hartley

By Eric Thauvette, Executive Director of Hartley Lifecare

The intentional community model has resulted in three men receiving very individualised and appropriate support services that are also incredibly flexible. The support workers who care for them are more than just workers; they have become an important part in the individual’s life and they are also involved in many aspects of planning and decision making. This model of support has increased the employees’ dedication and commitment to the men they support, their families and extends to the intentional community.

The general community has been very supportive of this model and has allowed us to raise awareness and the importance of inclusion of people with disability.

The support services we provide work best when families of the individuals are involved. We learn and know more about the individual, which places us in a better position to support them properly.

The biggest advantage for Hartley is the positive outcomes we see for the people that are supported. Where we have family involvement we see more commitment and more devoted workers. The support workers get feedback on their work directly from the families, which is very powerful.

This means that there is a lower turnover in staff and that we don’t spend a majority of our time recruiting. Families of individuals supported are often best placed to see what might not be working right or need adjusting. Working with the families allows us to identify issues early and be able to deal with them quickly. In turn this allows us to spend more time on the proactive and important matters that arise within the men’s homes and the rest of the community.

The intentional community is a very innovative model that is being recognised and Hartley benefits in being part of this model of support. Most of all, this model addresses the needs of the individual with a disability and has the best outcomes for them.

32  |   A place for everyone to belong

8

Challenges and compromises

Challenges into and the expectation that people would be friendly and inclusive and foster community harmony. There There are always challenges and compromises. The have been some difficulties with tenants’ personalities, families had to work with bureaucracy and this was not behaviour and activities, which has threatened the peace always easy. It took a long time and for years the families and cooperative spirit of the community. There have were frustrated by verbal assurances of commitment but been several times when police have been called to some no action. non-intentional community houses. (See description of non-intentional community residents in Section 4.) It is fair to say that in the early years (2004 to 2010) it always necessitated a visit to the ACT Minister for Physically, the group wanted the development to be more Disability (whoever it happened to be at the time) to get circular with the houses around a central green or at action from Housing ACT. least not in rows. But Housing ACT needed to maximise the land use by building as many houses as could fit; Once suitable land was found, Housing ACT was therefore the houses are in rows. The group also wanted professional and organised, and the project gained and a community building but again, to maximise the number held steady momentum until the houses were completed. of houses, this was not possible. The group thinks that they worked well with Housing There has been some compromise about the ratio of ACT during all of the building, refining of policies people with a disability to people without a disability and selection processes. A good respectful working living in the entire complex. The core families wanted relationship was developed, which, in the end, delivered the ratio to more accurately reflect that of the broader a wonderful community for 25 families who live in public community. However, there are eight people with a housing. disability living in the community — a ratio that is much higher than in the broader community.

Compromises

Inevitably there were compromises and some promises broken.

The families of the three young men were promised a place on the selection panel for the intentional community residents along with government officials and community members. For undisclosed reasons, and without discussion or notification, this did not occur.

Many of the tenants who were not part of the intentional community did not seem to be aware they were living in the physical environment of an intentional community. It had been agreed that all residents, whether part of the intentional community or not, would be aware of the nature of the residential development they were moving

Challenges and compromises     | 33

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34  |   Challenges and compromises

9

Safeguards

It is important that the lives of the three While the parents of Jackson, Dan and Ben are alive, active and advocating, there is some likelihood that they young men, the ongoing funding that supports can ensure their sons’ lives remains as they are now. the three young men, and the community itself, But safeguarding mechanisms are needed for when the

are all safeguarded.                                   parents are not around. This may be a circle of support or                                                      a microboard. Each family will likely individually address

this concern for their son. Jackson, Dan and Ben This work will never cease throughout the young men’s lives. Jackson, Dan and Ben are three young men who have enormous potential to live good lives where they are valued for who they are, valued for the contributions The individualised funding they make and valued as young men equal to any other Jackson, Dan and Ben need to know that theiryoung man, and entitled to the kinds of benefits and individualised funding and hence their independent livesopportunities other young men have. are secure. They need the assurance of recurrent funding. Currently, this potential is realised. Again, this needs to be reliable funding that will never They also have a right to be safe at all times and to know be threatened by changes in government, bureaucracy or that they lives will remain secure in future regardless of disability services, funding models or policy. changes in government, bureaucracy or disability funding, There is not much that the families can do about this services or policy. except to continue developing the community and The Getting a Life group have started to establish this promoting it widely so that all can see what a fantastic level of safeguarding through partnership with Hartley place it is and what fantastic lives Jackson, Dan and Ben Lifecare. This organisation understands completely the have. But, it is more than this — it shows:

community, the philosophy, and Jackson, Dan and Ben         •  what community with three young men placed at the

and their needs. The Hartley Board is cognisant of and centre can look like

supportive of Hartley’s partnership with the group.             •  how people will contribute to their lives and be good

It is easy for a life to be diminished, even after it has neighbours because they were asked to

been established in the way Jackson, Dan and Ben’s have      •  how the community benefits and learns from Jackson,

been established. Therefore, it is important that they have Dan and Ben

people close to them who understand person-centred          •  how three families have the peace of mind and their

living and who can work to maintain their lives of quality, own new lives because of the Benambra Intentional choice and control. It is important that Jackson, Dan and Community Ben have many people who know them and know what

• how this community can be an example of best their lives look like now, so that they can look out for practice to other people with a disability, families, them and for any erosion in their quality of life in any communities, governments, policy makers and the area: home, support, work, leisure, health, happiness. National Disability Insurance Scheme.

  Safeguards | 35

The intentional community and the non-intentional community

The power to decide who lives in both the intentional and non-intentional community lies with Housing ACT. It is the people who make or break a community. Much has been invested in this community to date — financially, emotionally and practically. The families do not have control over who Housing ACT offers homes to within the community.

The families have asked Housing ACT to write into the job description of the Director of Gateway Services, a department within Housing ACT, that the position involves liaising with the families of Jackson, Ben and Dan when vacancies occur. The families have asked that a potential new director understand that the mix of families within the community is key to its survival and success and that they be familiar with the community, the philosophy, the selection process for new tenants in both areas of the community.

The families have been given verbal assurances for this but have not seen anything in writing to date.

36  |   Safeguards

10

A place to call home — our vision is realised

The Getting a Life vision of an intentional It means they are as safe as it is possible to be. There are many people who know and look out for them. There are community exists. It is built, finished, peopled, many people who know all the support staff. Family are working and developing. always welcome. Friends of family are always welcome. Co-residents and other support staff talk directly to It was worth all the years of hard work, all the years of family; they call to ask advice or give information, they waiting, all the frustrations, tears, setbacks, seemingly send photos of joyous occasions, they drop in on Jackson, insurmountable difficulties and every one of the many Dan and Ben’s parents for a cup of tea and chat and vice meetings. It was worth the discussions, arguments, versa. debates, disagreements, unanswered emails and phone The Getting a Life group have had much to celebrate overcalls, the seemingly endless lobbying. It was worth the the years — each small step was cause to celebrate. Theyhours of thinking and writing and re-thinking and re have had many highlights: acquiring the land, turning thewriting. sod, watching the build, getting the keys, moving in. The Getting a Life group, with all their supporters The official opening by Dame Quentin Bryce, thenand allies and with the work of many, have achieved Governor-General of the Commonwealth of Australiathe almost unachievable. The Benambra Intentional on 20 May 2013 was the most wonderful event. ThereCommunity sits there in Phillip ACT as a successful were hundreds of people there — everyone who had hadexample of one kind of supported accommodation for anything to do with Benambra including many familypeople with a disability. members and friends, colleagues, politicians, bureaucrats, It reminds us that no matter how severe the disability community organisation members, previous Getting a Life or what kind of disability a person has, everyone can be coordinators, workers on the build and residents. There in control of where they live, who they live with, who was such an air of hope, happiness and achievement. supports them and how they are supported. It doesn’t Everyone was happy for Jackson, Dan and Ben and their matter how much or how little support a person needs families. It felt and was momentous. to live in their own home, that support — with adequate funding — can be tailored to that person so that each person has a life unique to them. It means that they can have a life and a home built around them and their wants and needs.

It reminds us that it is possible and it means that Jackson, Dan and Ben, along with their employment and recreation, have the best lives they could have.

A place to call home — our vision is realised     | 37

A thank you

By Sally Richards

We have much to be thankful for. We are thankful for the support of so many people, for the professionalism and expertise of Housing ACT staff, for our funding from Disability ACT, for the consideration and responsiveness of AMC Architects, for the partnership we have with Hartley Lifecare. We are thankful that our sons are living in such a warm friendly community in new homes.

We are thankful for the wonderful support our sons receive from the co-residents and the other support staff. The co-residents are working well, providing our sons with the necessary supports so they have a good life. They are also working to build community and relationships within the community.

I am thankful for my new life, post full-time carer of my son Jackson. I suspect Karen and Cheryl feel the same.

We are keen for our innovative supported accommodation model to be an example to others. Not to emulate it necessarily, but to use our ideas, lessons, compromises, mistakes and perseverance as an example of what can be done; to use it as a motivator and assurance that many things are possible, and that just because it hasn’t been done before doesn’t mean that it can’t be done now.

38  |   A place to call home — our vision is realised

Acknowledgements and key relationships

The families                                                •   Martin Hehir, former Chief Executive Officer,

Department of Disability, Housing and Community

Karen Connaughton has been a staunch ally and equal Services

contributor to this project. She especially spent hours          •   Lois Ford, former Executive Director, Disability ACT

working on the funding budget. At all times she has been                                                                   •   Maureen Sheehan, Executive Director,

and continues to be a mentor, friend, strategic thinker Housing ACT. and hard worker.

Dan’s father, Michael, and brother, Sean, have been Other thanksa great support and are keen contributors to the community. We also thank:

Cheryl Pattrick has been involved in the project since          •  Dame Quentin Bryce, former Governor-General of

2008. She has attended many meetings and has seen the the Commonwealth of Australia project to completion.

• Alastair McCallum and Dean McPherson of AMC Ben’s father, Steve, and brothers, Matt and Luke, have Architects

  generously contributed electrical expertise and time to • Liz Alexiev, Disability Programs Manager, Hartley

the community. Lifecare

Tim West, Jackson’s eldest brother, has provided his time,      •  Mr Neil Finch, Disability Adviser to Minister Joy

intellect and writing skills to co-author this paper. Burch

All three of Jackson’s brothers, Tim, Duncan and Lewis,        •    staff from Housing ACT, in particular David Collett,

are emotional and practical pillars of strength and Peter Johns, Franco Frino, Shaun Kelly, Richard

humour. Baumgart, Bridie Doyle, Frank Duggan

• staff from Disability ACT, in particular Kate StarickMac West, Jackson’s father, gave his love and support for 23 years of Jackson’s life. • colleagues and friends, including Ian Ross,

Community Connections Inc; Chris Redmond,

Woden Community Services; Maureen Howe,

Key champions Disability ACT

• David de Luca, Project Manager, St Hilliers We could not have succeeded in our venture without

• Jason Aslimovski, Site Managerthe support of our key champions: • Johanne Beirne, former coordinator of Getting a• Katy Gallagher MLA, Chief Minister of the

Life ACT Legislative Assembly; formerly Minister

for Disability                                                •   the co-residents and support staff at Benambra

•   Joy Burch MLA, Minister for Disability                    •   the core residents who form the intentional

community of Benambra.• Eric Thauvette, Executive Director, Hartley

Lifecare Inc

Acknowledgements and key relationships     | 39

Appendix 1: Getting a Life family governance

Family governance has many forms. This section describes family governance as it works in the Getting a Life group. While other models exist, we have found ours to be very successful. Our model has three elements:

1. The governance group, Getting a Life a. Consists of Ben, Dan and Jackson, their families, the coordinator. All must understand and agree with the principles and philosophy of the project and want to be involved.

b. Promotes and encourages a mutual ethic of right relationship, that is: humanness, integrity, individuality, honesty, openness, trust, modesty, etc.

c. Doesn’t standardise responses. d. Encourages unique and relevant responses to each persons wants and needs. e. Governs Getting a Life by guiding and making decisions about the principles, direction and membership. f. Ensures resources are directed where most needed ie the individual. g. Safeguards the ethical/guiding principles and intent of Getting a Life. h. Creates space for discussion, creativity, innovation, research and ‘doing better’. i. Provides support and leadership to others. j. Chooses and guides a host agency with which it has a written and moral agreement (memorandum of understanding).

k. Is accountable to project members, the host agency and any other organisation that invests in the project. 2. The host agency, Hartley Lifecare Inc a. Supports guiding principles. b. Maintains right relationship. c. Provides administrative, fiscal and legal support and advice to the Governance Group. d. Delegates authority to Governance Group to direct Getting a Life. e. Is a bureaucratic shield from departmental requirements. f. Trains and legally employs support workers. g. Informs the Governance Group of their legal obligations when choosing/managing staff. h. Informs people of their rights and responsibilities. i. Processes workers’ salaries and associated costs. j. Manages departmental reporting obligations. 3. Disability ACT a. Provides fertile ground. b. Creates space for us to trial innovative approaches and solutions. c. Has belief and trust in us and encourages us to come up with our own relevant solutions. d. Supports a non-standardised approach. e. Is flexible. f. Provides some funding. 40 | Appendix 1: Getting a Life family governance

Governance group: Getting a Life Keeps vision, maintains focus & develops principles, provides support & leadership

Ben, Dan, coordinator

Jackson

friends family

Getting a Life

The Board of Hartley Lifecare

has a ‘memorandum of understanding’ with Getting a Life; not legally binding

Hartley Lifecare Inc

Fiscal, legal,

Disability ACT                                       Board       employees,

staff, delegates        $, support and                                    CEO

fertile ground authority to governance body

Appendix 1: Getting a Life family governance      | 41

Appendix 2: Timeline of key events

The development of Benambra required more than 140 meetings between 2004 and 2013. In early years, these were mostly proposed and organised by the three mothers operating as the Getting a Life family governed group. Towards later stages, once the project to design and build Benambra was under way, meetings were also organised by staffers in ACT Government departments. This section sets out some of the most important meetings and events during the development of Benambra.

30/09/2004 Presentation by Sally Richards to senior ACT Government bureaucrats on Rougemont Intentional Community.

9/06/2005 Meeting with Mr John Hargreaves, ACT Minister for Disability.

14/06/2005 The Getting a Life group hosted the Rougemont/Deohaeko families in Canberra.

7/02/2006 Presentation on Rougemont Intentional Community to Housing Forum, ACT Legislative Assembly.

Next 18 months Meetings with Ms Katy Gallagher, ACT Minister for Disability, CEO Disability, Housing &

Community Service, Chair Hartley Lifecare Inc, ED Housing ACT, Disability Adviser to Ms Katy

Gallagher, President and Vice-President of Canberra Community Housing.

2/04/2008 Meeting with Guida, Moseley and Brown Architects for concept drawing.

27/06/2008 Bus trip organised by Housing ACT to look at examples of community housing.

16/04/2009 Meeting with Mr Kel Glover, Stimulus Package.

1/06/2009 Meeting with Mr David Dawes, Chief Minister’s Department.

31/03/2010 Meeting with Mr Neil Finch, Disability Adviser to Ms Joy Burch ACT Minister for Disability.

25/08/2010 Meeting with Ms Joy Burch, Mr Neil Finch, David Dawes, Ms Burch’s Chief of Staff.

17/09/2010 Outing with Mr Neil Finch, a trip to view seven potential sites for the Intentional Community.

27/09/2010 Research trip to Perth.

18/01/2011 Ms Joy Burch launches the land/houses development on site.

24/02/2011 First meeting with AMC Architects.

7/03/2012 Sod turning — start of construction.

16/05/2012 Building stops due to builder going into voluntary administration.

31/05/2012 Building resumes.

28/06/2012 Slabs laid.

03/05/2013 We get the keys and Jackson, Dan and Ben move in.

20/5/2013 Opening of Benambra by Dame Quentin Bryce AC CVO, then Governor-General of the Commonwealth of Australia.

42  |   Appendix 2: Timeline of key events

Appendix 3: Speech by the Governor-General at the official opening of the intentional community

Acknowledgements: Ms Katy Gallagher, Chief Minister. Ms Gai Brodtmann, Member for Canberra. Distinguished guests, all.

I am delighted to join you today for a very special housewarming. This place is a model of creative thinking and clever planning — a residential enclave that will be so much more than bricks and mortar. The vision: that every person who lives here will be engaged with the others. The aim: to create a community and foster a spirit of neighbourliness not because the residents are the same, but indeed because they are different from each other with a variety of talents and needs. The reality: 25 residences, including three for a particular trio of young men, Jackson, Ben and Dan — a common stake in the success of a new accommodation project and social initiative.

Countless ingredients have combined to bring this venture to fruition. Overwhelmingly though, it has been driven by the parents of Jackson, Ben and Dan, who have harnessed their love and hopes to ensure that their sons lead fulfilling lives. With the support of their families, these young men have already achieved much. They have learned skills, established networks and carved out unique career paths. Jackson has an award winning mail and pick-up delivery service. Ben is a mail courier at the Canberra Hospital. Dan is studying horticulture at the Canberra Institute of Technology and working part time at the National Convention Centre.

The next challenge — a big one — is for these young men to move into their own homes. The self-reliance this will entail is a natural and necessary step in their personal development and quality of life. I would like to pay special tribute to Sally Richards, the mother of Jackson. Sally and I have had several animated discussions about things practical and philosophical. It was Sally who hatched the ‘getting a life’ plan more than a decade ago, who has never taken no for an answer, and who has been unswerving in her belief in this project.

Sally, your dedication is truly inspiring. Again and again across my lifetime, I have observed that it is the parents of people with disabilities who make the difference. They know what is needed, they think about how to achieve it, and they work tirelessly to that end. As carers, advocates and fellow citizens, we owe them a huge debt of gratitude. Sally, Cheryl and Karen, who joined forces in 2005, have worked together through all manner of challenges and frustrations to reach this milestone. I congratulate you, individually and collectively, on your hard work.

To Jackson, Ben and David, I say ‘bravo’! I wish you success and happiness as you embark on a new stage in your life. I am full of admiration for your willingness to have a go. The occupants of the other 22 residences are uniquely placed to build on the work that has gone into establishing this community. You can be powerful and positive forces in your neighbours’ lives. Embrace that responsibility, and discover, through your involvement, new opportunities, understandings, knowledge and communication. Your own lives will be richer for it.

Friends, I hope that this community can be a shining example to all of us who are committed to enhancing the lives of people with disabilities, enabling them to participate as fully as possible in our national life. I have great pleasure in declaring the Getting a Life Intentional Community officially open. Welcome to the neighbourhood!

Appendix 3: Speech by the Governor-General at the official opening of the intentional community      | 43

Appendix 4: The intentional community residents

This appendix contains documents, forms and brochures used in the advertising of the intentional community to existing ACT Housing tenants, information for tenants interested in the community, the selection of intentional community members and the forms that ACT Housing tenants eventually used to apply to live in the community. The specific documents are:

1. General benefits of living in the intentional community. When we first proposed the intentional community idea, some people were unclear as to why anyone would want to live in the Intentional Community. This document was used in educating people as to the benefits of living in the community.

2. Brochure advertising the intentional community. This document, from May 2012, was mailed to 1400 ACT Housing tenants before information sessions held about the Intentional Community.

3. Responsibilities and obligations of residents of the Getting a Life Intentional Community. This document was distributed to all ACT Housing tenants who signalled interest in the intentional community at an information night.

4. Intentional community application form.

5. Philosophy of the intentional community. This philosophy statement was distributed to, and had to be signed by, all new members of the Intentional Community.

6. Intentional community selection criteria. This form was used in the interview and assessment of prospective Intentional Community members.

The documents begin on the next page.

44  |   Appendix 4: The intentional community residents

’ĞƚƚŝŶŐ Ă >ŝĨĞ /ŶƚĞŶƚŝŽŶĂů ŽŵŵƵŶŝƚLJ

There are a number of reasons why people are interested in creating an Intentional Community. The GAL group have embraced this concept because of the very sense of community that it promotes – because of the level of support and the feeling of belonging and sharing that can exist in an intentional community. This model of collaboration is attractive to many and in our case it is also important in helping to create independent lives for Ben, Daniel and Jackson, individually.

'ĞŶĞƌĂů  ĞŶĞĨŝƚƐ ŽĨ ůŝǀŝŶŐ ŝŶ ĂŶ /ŶƚĞŶƚŝŽŶĂů  ŽŵŵƵŶŝƚLJ͗

x This Intentional Community model will provide tenants with independent, high quality, low cost accommodation with security of tenure.

x A stronger sense of neighbourhood and community exists because it is encouraged and expected.

x It is a liveͲable community where all are encouraged to participate and contribute in the running of that community.

x An intentional community encourages an atmosphere of inclusion.

x There exists a healthy balance between privacy and community. Each member lives independently whilst benefiting from the community.

x There is also a feeling of security and a sense of protection against crime. All members develop relationships with their neighbours and feel that their personal property and home will be watched out for by other community members.

x Generally the concept includes the availability of community/shared spaces (BBQ area, veggie garden etc) and this encourages members to get to know each other and also saves on resources. It is envisaged that this community would include a common room and a common open space which would foster the development of a supportive community around each member’s home.

x More vulnerable members are more likely to be able to access company and assistance when necessary.

x    It allows the creation of a village feel in an urban setting.  It encourages the

creation of an environment of familiarity and trust.

Appendix 4: The intentional community residents      | 45

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‘ –Š‡ ‰‘‘† ‹–‡–‹‘•ǡ Š‘‡•–›ǡ ‹–‡‰”‹–› ƒ† •—’’‘”– ‘ˆ ‘–Š‡”• „‘–Š ‹•‹†‡ ƒ† ‘—–•‹†‡ –Š‡‹” Š‘‡•ǡ –Š‡ ‹–‡–‹‘ƒŽ …‘—‹–› ƒ† –Š‡ „”‘ƒ†‡” …‘—‹–› ˆ‘” –Š‡‹” ™‡ŽŽǦ„‡‹‰ ƒ† •–ƒ†ƒ”† ‘ˆ Ž‹˜‹‰Ǥ

Š‡› ƒ”‡ ƒ– ”‹• ‘ˆǣ x ‘‘” •—’’‘”–ǡ ‡‰Ž‡…– ƒ† ƒ„—•‡Ǥ x ƒ˜‹‰ –Š‡‹” •–ƒ†ƒ”† ‘ˆ Ž‹˜‹‰ …‘’”‘‹•‡† x ‘– Šƒ˜‹‰ –Š‡‹” „ƒ•‹… ‡‡†• ‡– x ‘– Šƒ˜‹‰ –Š‡‹” ™ƒ–• ‡– x ‘– „‡‹‰ Š‡ƒ”†ȀŠƒ˜‹‰ ƒ ˜‘‹…‡

Appendix 4: The intentional community residents      | 47

Intentional Community

Application Form

The purpose of this form is to give Housing ACT tenants the opportunity to apply to be a resident in the Intentional Community. If you would like help with completing the form, please contact:

x XXXXXXXXXXX Housing ACT

Members of the intentional Community The Intentional community will consist of 25 new Housing ACT properties in a development in Woden. Three of these properties will be allocated to already identified clients who have a moderate to severe disability.

Other residents selected to move into the community will commit to the requirements of the intentional community to create a neighbourhood of friends and support.

How we will select members for the intentional Community Interested tenants will complete this application form which will be forwarded to a specifically selected panel of experts drawn from relevant government and community services.

Each application will be read by the panel members, who will work together to choose the tenants for the project based on the responses to the three primary criteria included in this application.

Selection Guidelines

The guidelines for choosing tenants for the Intentional Community will be used to assess each application. Please read these carefully before completing the questions on the following pages.

Guidelines for choosing members of the Intentional Community A member of the Intentional Community will be: x a current tenant of Housing ACT; x be enthusiastic about the opportunity to create and participate in a neighbourhood of support; x be prepared to attend general residents meetings; x be prepared to become a registered volunteer of Hartley Lifecare; x help provide an environment that is supportive, friendly and sensitive to the needs of people with a disability; and x provide friendship to three young men with disabilities by way of advice and practical support.

48  |   Appendix 4: The intentional community residents

How do I complete my application?

1. Fill in your contact details and answer the questions on the following pages: Application form for the Intentional Community.

2. Post your completed expression of interest form to: Housing ACT, Locked Bag 3000, Belconnen, ACT 2616 or email to: XXXXXX

3. Please note that forms are to be received by Housing ACT no later than Friday 17 August 2012.

Accessibility

The ACT Government is committed to making its information, services, events and venues, accessible to as many people as possible.

If you have difficulty reading a standard printed document and would like to receive this publication in an alternative format – such as large print or audio – please telephone (02) 6205 0619.

If English is not your first language and you require the translating and interpreting services – please telephone 131 450.

If you are deaf or hearing impaired and require the TTY typewriter service– please telephone (02) 6205 0888.

Appendix 4: The intentional community residents      | 49

Application for the Intentional Community 2012

Name

Postal Address

Phone                                       (h)                  (mob)

Email

I am a public Yes … housing tenant (the Intentional Community is only available to existing Housing ACT tenants) Applicant’s signature

Date

1. Please provide some examples of how you are a good neighbour and help to develop or participate in your community? _________________________________________________ _________________________________________________ _________________________________________________ _________________________________________________ _________________________________________________ _________________________________________________ _________________________________________________ _________________________________________________ _________________________________________________

2. Please outline any community based experience you have, such as undertaking a caring role or volunteering for a community agency. _________________________________________________ _________________________________________________ _________________________________________________ _________________________________________________ _________________________________________________ _________________________________________________ _________________________________________________ _________________________________________________

   50 | Appendix 4: The intentional community residents

3. Please outline why you are interested in participating in the intentional Community and what you think you can bring to the community. _________________________________________________ _________________________________________________ _________________________________________________ _________________________________________________ _________________________________________________ _________________________________________________ _________________________________________________ _________________________________________________ _________________________________________________

4. If you are chosen as a member of the Intentional Community, would you agree to becoming a registered volunteer with Hartley Lifecare (including allowing a police check to be conducted)?

Yes … No …

5. If you are chosen as a member of the Intentional Community, would you agree to participate in the general resident meetings and to contribute time and energy to supporting the other members of the Intentional Community?

Yes … No …

6. Please tell us anything else that would be of interest in our consideration of your application for the Intentional Community?

Thank you for your application and Housing ACT will be in contact with you about the outcome in the near future.

Appendix 4: The intentional community residents      | 51

PHILOSOPHY

of the

INTENTIONAL COMMUNITY

THE VISION STATEMENT:

The Intentional Community is a community of people who support all residents of the Intentional Community to feel safe, supported and included and where all residents contribute to the ongoing welfare of each other.

THE MISSION STATEMENT:

The Intentional Community is a neighbourly welcoming place where residents respect, help and are friendly to each other and are committed to creating a community of support. To bring this vision into reality, residents of the Intentional Community will welcome and get to know new and existing members of the community and will actively and willingly help out others in the community by sharing their time, skills and resources with each other. Residents will attend and contribute to residents’ meetings, social events and occasionally invite others into their homes as part of creating a safe and inclusive community.

THE VALUES STATEMENT:

Residents will demonstrate a belief in the vision and mission statements of the Intentional community and in the benefits of this community to themselves and others.

Residents will be good neighbours, get to know each other by name, help out with minor tasks that others might find difficult and share resources such as gardening tools.

Residents will be actively involved in their community and neighbourhood.

Residents will help others.

Residents will work cooperatively, collaboratively and harmoniously with others.

Residents will be proactive in making positive changes and implement ideas for improvement.

AGREEMENT

I ………………………………………………… agree that I am committed to the vision, mission and values statement of the Intentional Community and commit to: x Living the values and beliefs outlined for the Intentional Community now and into the future. x Contributing time and resources to ensure the mission and values outlined become a reality x Building a community that includes Ben, Jackson and Daniel and all other residents of the

Intentional Community

x Becoming a volunteer of Hartley Lifecare and have a Working with Vulnerable People check (similar to a police check) x Attending and contributing to general resident’s meetings and community social events. x Resolving any conflict through community based solutions.

Signed…………………………………………………………………………………………………………………………………………………….

Date…………………………………………………….……………………………………………

52  |   Appendix 4: The intentional community residents

Intentional Community

Selection criteria

Members of the intentional Community The Intentional community will consist of 25 new Housing ACT properties in a development in Woden. Three of these properties will be allocated to already identified clients who have a moderate to severe disability.

Other residents selected to move into the community will commit to the requirements of the intentional community to create a neighbourhood of friends and support.

How we will select members for the intentional Community Each application will be read by the panel members, who will work together to choose the tenants for the project based on the responses to the three primary criteria included in the application and the selection guidelines that were included with the application.

Guidelines for choosing members of the Intentional Community A member of the Intentional Community will be: x a current tenant of Housing ACT; x enthusiastic about the opportunity to create and participate in a neighbourhood of support; x prepared to attend general residents meetings; x prepared to become a registered volunteer of Hartley Lifecare x willing to help provide an environment that is supportive, friendly and sensitive to the needs of people with a disability; and x able to provide friendship to three young men with disabilities by way of advice and practical support.

The panel will assess each application using the selection criteria panel response form and, using consensus, seek to agree on ratings for all applications. The numerical ratings are not binding, they are to be used to assist the panel members and the panel as a whole to reach considered, accountable and fair decisions. If further information or clarification is required the panel may seek to interview applicants in person or via telephone.

When making its decisions, the panel will take into account differing levels of writing ability and English language proficiency that applicants may have. The panel will consider the need for the Intentional Community to be diverse and representative of the wider A.C.T. community and the need to match properties with the individual needs of applicants.

The panel will then select up to 22 future residents from these applications. Note that the panel may not approve 22 from the first selection round and future expression of interest rounds can be held until 22 residents have been selected.

Appendix 4: The intentional community residents      | 53

Appendix 5: Co-residency documents

This section contains documents about the co-residency model:

1.    Information regarding the co-resident model of support. This document was used in the education of ACT
   

Government staffers, Hartley Lifecare and other interested parties.

2.    Position description: co-resident for Jackson West. This document is the formal position description for the
   

co-resident that cares for Jackson West.

General Information on Co-Residency in Benambra Intentional Community

Adapted from Lower Great Southern Community Living Association

x The co-resident lives with the person with a disability. x A co-resident may be a single person, a same sex or heterosexual couple in a relationship or friends, a single parent, or a family. x The co-resident applies for the position addressing selection criteria and is interviewed by the person with a disability, their family and Hartley Lifecare. x This model is cost effective. Co-resident’s are currently offered a salary with salary packaging. x The co-resident performs their job according to a duty statement. x The co-resident has annual leave, workers compensation, superannuation, training and support from Hartley Lifecare, the families and the other residents in the intentional community. x The house is home to the person with a disability and the co-resident/s.

x  The support by the co-resident  is tailored to the needs and interests of the person with a

disability. x By employing a co-resident with similar interests to or shared interests with the person with a disability both lives are more enjoyable and expanded.

x  The person with a  disability  is encouraged and supported to do as much as they can  for

themselves. x Family support and ongoing involvement is valued and encouraged. In our model of support the lines between work, leisure, family and friendship are blurred. The person with a disability, co residents, support staff are encouraged to bring many people into the home and life of the person with a disability and vice versa. This is dependent on the permission of the person with a disability but it is likely that x many people who would not otherwise have contact with people with a disability do so as family and social networks of the co-resident extend to include the person with a disability and at times their family. x Existing natural networks are maintained and expanded. x Routines, from previous living arrangements can be replicated where appropriate. x People can receive all the support they need in their own home. x People can age in place. x The level of disability does not preclude people from this model of care. x There is an opportunity for lifelong relationships to be formed x The role is much more than that of a support worker as living with a person and sharing a home forms a bond different to and stronger than the conventional one of support worker/client. x There is opportunity for flexibility and spontaneity in a person’s life. x The person with a disability is the head tenant and holds the power. This is their home and they decide who lives with them, who supports them and who will be invited into their home and who will be asked to leave. x People have the opportunity to be individuals and not one of a group of people with a disability sharing a house. x People can own household items which is not always possible in other models of support. x Much of the work being performed by the co-resident such as cooking dinner, cleaning the house etc are duties that they are also performing for themselves since the are in their own home. This needs to be considered when negotiating the salary. x The co-resident has core support days and hours with negotiated respite built in; this is flexible and can change for special events, public holidays or longer holidays.

x  The co-resident has a vested interest in  all parts of the person with a disability’s  life as the

happiness and health of the person will affect both of them.

54  |   Appendix 5: Co-residency documents

HARTLEY LIFECARE INC.

POSITION STATEMENT

January 2012

BRANCH: JOB TITLE:

Disability Programs Co-Resident – Jackson West

SUPERVISOR: LOCATION:

Disability Programs Manager Phillip

AWARD: SALARY:

Hartley Lifecare/Union Collective

Agreement 2008 Salary packaging of up to $xx,xxx tax free is available CONDITIONS: x Ability to work varied hours and days including evenings and weekends x Subject to police check x Australian citizenship or appropriate visa required x Incumbent will undertake mandatory training in-line with Hartley Lifecare’s policies. __________________________________________________________________

SELECTION CRITERIA

1. Demonstrate strong commitment and appropriate values towards people with disabilities and their families.

2. Experience in providing appropriate support to people with disabilities including personal care, social support, community support and domestic support skills.

3. Ability to promote the health and well being of people with disabilities.

4. Demonstrated good housekeeping skills.

5. Demonstrated ability and commitment to cooking healthy, balanced meals.

6. Good communication skills.

7. Ability to apply occupational health and safety, and participative management principles and practices.

8. Current Driver’s Licence and First Aid Certificate.

9. Ability to effectively use computers and Office suite such as Microsoft Word and Microsoft Outlook.

JOB DESCRIPTION

1. Provide personal care, community and social support and domestic services as required by Jackson, Sally Richards and the Manager.

2. Ensure Jackson is supported to do all that he can for himself. Appendix 5: Co-residency documents | 55

3. Attend to the following: personal hygiene, grooming, dressing, eating and medication, as outlined on Jackson’s plan and as directed by Sally Richards or the Manager.

4. Attend to Jackson’s physical and material well-being and safety, while encouraging independence, and offer alternative individual choices where possible.

5. Provide support and companionship to Jackson at home and in the community.

6. Respect the privacy, dignity and confidentiality of Jackson and his family and other support workers.

7. Identify and act on factors that may contribute to Jackson’s physical deterioration and social isolation.

8. Report to the Manager on Jackson’s health and well-being and any other matters of concern.

   9. Undertakes work showing due care and diligence and follows all safety guidelines

related to providing a safe home.

10. Communicate effectively with Jackson, his family, friends, the co-ordinator and Hartley staff.

11. Maintain accurate records as required.

12. Inform and liaise with office and other staff on all relevant matters.

13. Attends training, planning sessions and meetings as required by Hartley Lifecare or Sally Richards.

14. Abides by the policies and procedures of Hartley Lifecare including staff code of conduct and occupational health and safety policies.

    56 | Appendix 5: Co-residency documents

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