Creating Opportunities for Social Inclusion
Australian Down’s Syndrome Journal (NSW/VIC
The right of people with disabilities to be fully included in mainstream society is a well established policy goal. Yet, many people with disabilities remain excluded from a range of social experiences that people without disabilities usually take for granted. In the Transition to Retirement research project we supported 27 older adults with a lifelong disability to join local mainstream community or volunteer groups. Here we share some of our experiences and discuss what we have learnt about creating opportunities for social inclusion. All names and photos are used with permission unless otherwise stated.
Leone Joins a Local Seniors Group
Leone, pictured above, has had to reduce her days at work over the last few years due to ageing. She currently works one day per week, (the minimum allowed number of hours), at a supported employment factory in Western Sydney. As Leone embarks upon a gradual transition to retirement, what can she do on the days that she used to work? Leone’s accommodation service responded to her needs and that of other service users in a similar situation by providing day activities based on individual needs and preferences. Although this day program offered a variety of activities and outings to fill these days, embarking on their transition to retirement was a new challenge. We asked the question: are there other alternatives for Leone and her peers to a disability-specific program?
The Australian Foundation for Disability (AFFORD) and St John of God, Accord developed research partnerships with the universities of Sydney, La Trobe, and Molde, Norway. This partnership offered people with a lifelong disability the opportunity to replace one day a week to join a local mainstream community group or volunteering opportunity of their choice. The research team then trained and supported people without a disability already in the chosen group to mentor the person with a disability. Mentoring consisted of basic assistance to the individuals. For example helping Leone to set the tables, reminder her about money for the raffles, and encouraging her to be involved in various activities. Mentors, as natural supports, also helped to encourage social interaction by helping to ensure the person was included in conversations.
Thus, the research team successfully supported Leone to join a local social group for seniors one day per week by working in partnership with Leone, her accommodation service, AFFORD and the volunteer mentors. Leone is the only participant at the seniors group who has a lifelong disability and she now attends the group every week with no paid support at all. After attending the group for more than 18 months, this is what Leone has to say:
I come here every Thursday. Someone drops me off and I walk up the ramp by myself. I bring my own knitting and have a coffee with my good friends. I have morning tea then play bingo. I can see the numbers myself to put the “dobber” onto the card. I've won bingo once and won chocolate. I shared it with everybody else. Sometimes I play dominos. I give $2 every week in the box, $5 for lunch and $1 for the raffle. I wipe the mats and clear the table off. I go home with Brian in the bus because I'm not walking home! I know everybody on the bus. I'm home by 2pm. I like everything. I enjoy everybody's company. We're one big happy family.
This project has a strong sense of Person Centeredness. Nevertheless, it is important to note that Leone’s success initially required a considerable amount of input from the research team. Likewise, this up-front intensive support was needed for all of the individuals in the project to decide on their retirement lifestyle. So the first step for Leone was to help her articulate what interests or hobbies she had and what she hoped for as she transitioned to retirement. Secondly, the team had to find a local group that matched Leone’s interests. Finding a group in Leone’s local community that was the “right fit” for her was a lot of work. Thirdly, the group had to be approached to ensure that the existing members were comfortable trying something new. This entailed reassuring group members that the right amount of support would be provided by the research team to ensure Leone had the best chance to settle in. Leone was then given the opportunity to have a look at what the group offered so that she could decide if it felt right for her. Finally, the team needed some existing group members to volunteer to mentor Leone; this step was far easier than anticipated. People came forward gladly and these mentors were provided with training and guidance on how to engage Leone in activities and create social opportunities. Leone’s story suggests that she has made many new friends and acquaintances and has learnt some new skills. Importantly, she is participating in a non-disability specific setting and is now more included in her local community than she was in a disability-specific program – she now bumps into friends from the seniors group at the local shops and stops to have a chat – another new experience.
Graeme Volunteers at a Community Plant Nursery
The other participants in this research project have also shared new experiences and agree that they now have a wider social network than previously. Graeme, a man who has been very shy for most of his life, now socialises with more than 10 other volunteers each week at a community plant nursery. Through the retirement planning process Graeme talked about his passion for plants so we supported Graeme to join his local community nursery as a volunteer. At first it was very confronting for Graeme, not only did he have to socialise with people he did not know, but also he faced a change to his routine. Graeme also had reservations as his retirement planning resulted in a drop in pay each week. With encouragement from staff, family members and the research team, over many weeks Graeme eventually decided to give the nursery a try. A large part of reassurance for Graeme came from teaching him a new travel route using a bus, a train, and then a short walk to the nursery. The hours involved in travel training over many weeks resulted in a great deal of trust being developed between Graeme and the travel trainer.
Once at the nursery the trainer then acted as a trusted “social buffer” for Graeme; a role that was gradually reduced and withdrawn over the months. The mentors at the nursery gradually taught Graeme some nursery skills. Graeme has now volunteered at the community nursery for over one year, travels alone and participates with no paid support from disability staff. Here is what Graeme says about the group:
I only come here on a Wednesday and three days at the factory. I get here by bus out the front of the village and go straight to Richmond and then I just go back up to the lights at the Mc Donalds and down to the train and it goes from Richmond to here.
Sometimes I write my name in the book. I weed the garden and when they want loads of dirt to the barrow.
I like coming here to join in with all these ones [other volunteers]. My life changed a lot coming here…me and meeting all the ones [volunteers]. I like having morning tea with all the others and having a joke with Martin.
Volunteers at the nursery are independently teaching Graeme how to write which has given Graeme additional skills. This new part of Graeme’s life has had a greater impact on his self-confidence than any of us could have imagined at the beginning. Staff from Graeme’s accommodation service have observed that since attending the nursery, Graeme is friendlier to other residents at his home and more open to socialising with people he doesn’t know in the community. Graeme’s sister stated that his attitude toward embracing independence has changed and that he now has something new to converse with others about. Graeme has been filmed in a DVD resource describing the research project, he has travelled to Adelaide and participated in a national conference presentation about his experiences, and is booked to present at another national conference early in 2012.
For other participants, particularly those with higher support needs, the type of support has varied. For example, our main role for one man with sometimes unstable mental health problems has been to be present over the first few months at a community-based Men’s Shed as the other Shed members gradually got to know him and understand his sometimes eccentric statements or actions. This man wanted to work with wood and could follow verbal prompts, for example to ‘sand a piece of wood’, so we didn’t need to provide specific support with tasks at the shed. The other Shed members now accept him and understand that on some weeks he may struggle to fully participate in the shed’s activities, while on others he participates quite actively. Again, after the initial period of support elapsed, this man now attends the Shed each week without any staff support.
Heather Joins a Community Kitchen
Another example was that of Heather. She has intellectual disability and has spent many years or her early life living in a secluded large residential complex. Heather was supported to join a local community kitchen. The community kitchen is a shared space where people with an interest in cooking meet each week to prepare and eat a meal together over several hours. Heather has a great love of cooking but had not had the chance to develop beyond her basic cooking skills. We taught the group the basics of person centred active support- this means that the group members themselves learned how to teach Heather cooking skills in a way that she could understand. Heather now takes part in all the group activities, has learned a lot of new skills and has continued going to the community kitchen without any staff support for over a year.
These brief stories give an insight into how creating opportunities for social inclusion is achievable with the right level of support. Essentially, the key ingredients are a person who is willing to try something new, mentors who believe in what is possible, and skilled personnel to initiate and support the mentors and other group members. After finding the community group with the “right fit”, our experiences suggest that people without disabilities who are existing members of community or volunteer groups are more than willing to welcome people with a disability into their group; provided they are confident that the right amount of support to give it the best chance of all stakeholders succeeding is available.
Transition to Retirement DVD
AFFORD created a DVD titled Transition to Retirement; this resource tells more stories from our project together with expert commentary about the model and the variety of support that is required to make this type of social inclusion work. We have shown that social inclusion is possible and successful using this model. Best of all, we have helped create an opportunity for many individuals that is new and unique to them that is not totally reliant on disability services.
For more information about the research project, in Sydney Roger Stancliffe can be contacted on (02) 9351 9984 or via email: firstname.lastname@example.org In Melbourne Chris Bigby can be contacted on (03) 94791016 or via email: C.Bigby@latrobe.edu.au
For more information about the wider transition to retirement project at AFFORD, Nicolette Gambin can be contacted on (02) 8784 2900 or via email: email@example.com . For information on the Transition to Retirement DVD resource see www.afford.com.au and follow the TTR tab. For those interested, we have published an article about the support model, coined Active Mentoring; please contact any of the team for a copy of this article:
Wilson, N. J., Stancliffe, R. J., Bigby, C., Balandin, S., & Craig, D. (2010). The potential for active mentoring to support the transition into retirement for older adults with a lifelong disability. Journal of Intellectual & Developmental Disability, 35(3), 211-214.
Nathan J. Wilson, PhD Syd, Research Associate, Faculty of Health Sciences, The University of Sydney, P.O Box 170, Lidcombe, NSW 1825 Australia. firstname.lastname@example.org Tel.: + 61-2-93519680 Fax: + 61-2-9351 9197
Roger J. Stancliffe, PhD, Professor of Intellectual Disability, Faculty of Health Sciences, The University of Sydney, P.O. Box 170, Lidcombe, NSW 1825 Australia. email@example.com Tel.: +61-2-93519984 Fax:+61-2-93519197.
Christine Bigby, BA(Hons) AppSocStud Bradford, PhD Melb, MSW, Professor and Leader of the Living with Disability Research Group, Faculty of Health Sciences, LaTrobe University, Bundoora, Vic, 3086, Australia, C.Bigby@latrobe.edu.au Ph 03 94791016, Fax 03 9479 2436.
Nicolette Gambin, Transition to Retirement Co-ordinator, The Australian Foundation for Disability (AFFORD); firstname.lastname@example.org Tel: +61-2-87842924.
Diane Craig, BSW., B.Ed., Grad. Dip. Family therapy (clinical practice), PhD candidate, School of Social Work and Social Policy, LaTrobe University, Bundoora, Vic, 3086, Australia email@example.com
Susan Balandin, PhD, MA, Dip RCSLT, FSPA, Professor in Health and Social Sciences, University College Molde, Postboks 2110, 6402 Molde, Norway, Susan.Balandin@hiMolde.no Tel: +47 712 14035, Fax: +47 712 14100.
This research was supported under the Australian Research Council’s Linkage Projects scheme (Project number: LP0989241) and with the assistance of two industry partners: The Australian Foundation for Disability (AFFORD) and St John of God, Accord. The views expressed herein are those of the authors and are not necessarily those of the Australian Research Council or the industry partners.
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