Queensland Parents for People with a Disability

Summary of a study exploring

Community Connectedness

The Quest for Belonging

SUMMARY

QPPD believes that when people with disability are connected and have relationships with others we are ALL safer, more respected, have greater opportunities and more enriched lives.

We don’t want a service – we want, and deserve, a life. Having relationships – reciprocal relationships – is a central component if we, as people labelled with a disability, as well as those without a disability, are going to achieve this, that is, get a life!

(Reflections on my life: Confessions of a Baby Boomer, Duggan, 1999)

This document reports on QPPD's investigations around the themes of belonging and community connectedness and makes recommendations for a new focus in supporting people with disability to "get a life".

QPPD’s study of how six individuals with disability have formed and sustained connections within their communities found that:

· Mutual, reciprocal relationships enriched those involved

· Activity alone did not automatically result in feeling or becoming connected

· Creative and non-traditional approaches were key to aiding connectedness

· Forming connections and relationships required perseverance, risk, and initiation

· Deeply rooted historical values and assumptions about people with disability were overcome through personal connection

· Family connections opened doors to community

QPPD recognises the need to build on the possibilities highlighted by the lives of the individuals we met through our study. QPPD challenges the predominant culture and practices of the human service system to program, control and manage people with disabilities. We believe that the way forward requires a system oriented to resourcing and supporting people with disabilities in personalised ways.

Community Life is about belonging through a range of activities and relationships from intimate commitments with family and significant others, through friends and acquaintances to local service providers with whom connections are made during the activities played out in everyday life.

(Opening Doors to Life, QAI,

May 2001)

We understand that this will mean a fundamental shift in the way all human services:

1. Regard people with disability and their families

2. Define the roles and responsibilities of staff

3. Spend money

4. Exercise decision-making and accountability

5. Relate to community

THE PROJECT

In April 2001, QPPD held a workshop with family members and people with disabilities in key roles in Queensland. Our purpose was to make sense of what was happening for adults with disability with particular reference to the policies and practices of Disability Services Queensland.

Through our analyses we were able to identify great questions of importance to people with disability and their families including:

1. How can local communities be involved in transforming deeply embedded social attitudes towards adults with disabilities through developing meaningful relationships with individuals?

2. How is a secure future, embedded in local community life, developed and guaranteed with minimised vulnerability, with/for each adult with a disability?

3. How can the use of new money be allocated and safeguarded so that it enables the growth of new creativity, knowledge and strengthening within local communities so that adults with disabilities have a decent life?

We concluded that one of the key themes for focusing work in support of real life opportunities with people with disability is:

The internal building of the community's capacity to welcome and offer hospitality with individuals with a disability so that ordinary life relationships at home, in the local neighbourhood and in the wider community become the stuff of life.

A major strategy subsequently identified was for a research project to be conducted focusing upon what is needed to include and connect people with disabilities to their communities. This project aimed to explore understandings of authentic community connectedness by focusing upon a small number of individuals who were recognised as being well connected within their community.

What do we mean when we talk about community, inclusion, and connectedness?

The QPPD Research Steering Committee felt it was vital that we establish what we meant by the words Community, Inclusion and Connectedness. Over time and within certain contexts these words have come to mean a variety of things. Below are the definitions we used to guide the project and group discussions.

Community is a cohesive, dynamic network of diverse social relations characterised by supportive engagement, mutuality and reciprocity, and is a vital resource for the fulfilment and enhancement of individuals’ fundamental, everyday concerns, optimal functioning and wellbeing.

Inclusion extends beyond ‘being’ (the right of participation and access) to ‘belonging’ (actively and respectfully recognising, enabling and affirming individual identity, community membership, and diversity).

Connectedness is the authentic and sustained embrace of individuals and community, signified by a stable network of enriching relationships, rewarding experiences and valued roles.

THE PEOPLE

Six people with disabilities, who were identified as having many and varied links with their communities, were invited to take part in the study. The Steering Committee members’ personal networks were the basis of identifying the participants. The participants nominated and invited a cross-section of people from their personal networks, including family, friends, colleagues, support workers, and employers to a focus group meeting which was recorded by the researcher.

We were concerned by the need for extensive investigation to find individuals, particularly those with significant disabilities, who identified themselves or were known to have substantial community connections and personal networks. It was clear that for many people the struggle to receive the most basic of supports provides enormous barriers to even conceiving of a life enriched by community connections.

None of the six participants wanted to be identified as having “perfect” lives or even lives that were truly inclusive. They cautioned us against a utopian vision of community and spoke about many barriers that exist. There was also recognition that all of us, as human beings, naturally seek out engagement with others and also have struggles in our quest for connectedness.

Whilst each person’s story presented a unique set of circumstances and opportunities, each was searching for an authentic life despite the likelihood of rejection, substantial barriers and tensions. No one we spoke to suggested that there was an easy or magical answer; we were not offered simplistic solutions or definitive models. Inclusion and connectedness were recognised by all participants to be ongoing, slow and evolving processes for all people.

Adam is a 19-year-old young man living with his parents in a rural town. He attended the local state school from preschool through to completing Year 11. He has a strong peer network established during his school years with which he continues to have regular contact, particularly by phone. Both parents are very actively engaged in community activities and organisations. Adam has been employed in the town in various roles. His current part-time contract employment enables regular, frequent contact with local businesses, and includes attending weekly staff morning teas in one establishment. Adam has funding through a Moving Ahead package, which enables him to undertake computer budgeting, golf, and pottery classes, regular exercise by walking his dog, and a literacy program at TAFE. He attends to his own shopping and personal finances, as well as daily household shopping needs.

Felicity is a 22-year-old married woman who lives in rural Queensland on a family property worked by her husband, his parents, and younger brother. The nearby township has been a source of flexible support and assistance to the whole family, particularly since the advent of Felicity’s disability a year ago. Community members take an active interest in Felicity’s progress and achievements. For instance, she recently commenced working one day a month in a local retail store, and regularly attends to family shopping needs with assistance from various shop owners. Felicity enjoys the easygoing pace and caring interest availed her through extensive social interactions in this small community.

Beth is an active, single woman aged in her sixties, a mother and grandmother, who lives alone in a regional township. Her residence is situated centrally to enable easy access to relevant services and facilities. Her daughter and grandchildren live nearby. Over her life, she has lived overseas, interstate, and in a range of Queensland communities. She has a diverse range of employment qualifications and training, but has experienced considerable barriers to achieving paid employment. She currently works advocating vigorously for people with disabilities, is a regular worker at the local Salvation Army, and does on-call paid employment. Beth has a large, and diverse range of social contacts and acquaintances, however she feels creating stronger, reciprocal relationships have been an ongoing challenge.

Cassie is a single woman aged in her late twenties, who lives with her parents. She was educated in a special school until the age of 18, and then moved to a state high school, which had newly acquired a unit for students with physical impairments. Cassie successfully completed year 12 at the age of 20. She has studied two diploma courses, and whilst having been accepted for Law at university, chose not to take up the offer. Currently Cassie is completing further TAFE studies, which entail work placements with people with disabilities. She is also on various committees in disability related organisations. Cassie, her family, and many of her friends are active, long term members of an international service organisation.

Eric is a 19 year old young man, living in a regional township with his mother and older brother. Whilst Eric’s school years were spent in special education settings, significant positive changes occurred for him when facilitated communication was introduced in early adolescence. Since 1997, Eric has been studying at TAFE. He currently studies year 10 and 12 subjects and is considering university in 2002. He has written and published a book and is working on another. In May 1999 Eric’s funding package was increased, as a consequence of his mother’s major chronic health issues. A locally based service provides significant support, and is considered by Eric’s family to be essential for enabling his continued inclusion in an increasing range of academic and social activities. A priority is to train more workers in facilitated communication techniques.

David is a single man in his mid fifties who lives on his own in an inner-metropolitan suburb, and is well known within his local community. He works part time, and has substantial involvement on a number of committees concerned with disability issues. David’s schooling was at a special school. He has two university degrees, and is a trained counsellor. For a twelve-year period David lived in an institutional environment, a time in which he states he became ‘street wise’. David employs support workers - all of whom have been with him for at least five years - for specific personal care roles. David is a constant campaigner committed to inclusive societal values.

WHAT WE LEARNT

Mutual, reciprocal relationships were the aspiration

People with disabilities in this study had a range of relationships with others: familial connections, close long term friendships, acquaintances, and paid support staff. The presence of these personal relationships was personally validating and enriching for all parties and provided a climate of mutual trust, respect and responsibility. These strong foundations enhanced opportunities for greater connections and social engagement within the broader community.

“It’s got to be reciprocal.”

Participants told us the relationships they looked for were ones where the engagement was mutual and reciprocal. It was difficult for participants to pinpoint what triggered these relationships. It was suggested that common interests, sharing an experience, regular frequent contact and personality were contributing factors. Relationships developed over time and the rate at which reciprocity happened was highly unpredictable. One focus group participant spoke about his surprise at some of the people his son had in his personal network. It was evident that every interaction is a possibility for relationship.

“If you had to pick them I would say they would be the last people, well not the last, but you would never pick them.”

Four of the six participants had developed friendships with one or more of their support staff. Again, it was difficult to predict with whom and under what circumstances a deeper relationship would emerge. Workers who were interviewed expressed a desire to honor the person’s trust and privacy, which may have accounted for these relationships becoming more personal and natural over time. One of Eric’s workers spoke of his difficulties in balancing and differentiating multiple roles - carer, advocate and friend. As a consequence his work role was altering, becoming more office-based, to enable enhancement of the friendship.

Activity or Setting alone did not automatically result in feeling or becoming connected

Even though participants engaged in many different activities including employment, church, leisure and activism, not all of these resulted in establishing strong connections and relationships. One participant acknowledged that although he worked he had not formed friendships with any of his colleagues.

“So it doesn’t really matter which setting. It’s not the setting so much as the person or people.”

The rural participants all had strong views about community cohesiveness, trust and loyalty for each other, and for their town. They highlighted distinctions between rural and city locations including:

· the difficulties in dealing with the rushed pace of city living

· the lack of time and caring demonstrated

· the lack of understanding, particularly by health professionals, of distance issues for rural patients

· higher risk of being perceived a ‘failure’.

“This town has a lot of services/organisations for people with disabilities. Volunteering and putting back into the community. People with disabilities are more publicly seen. People are more embracing than in the [metropolitan area], although facilities are down on what they have there.”

The general perception was that bridging and linking to wider networks was more difficult under such conditions, and stressful.

“Yeah I guess everyone in [town] knows everyone. It is a great place but I don’t think it’s the only one. I mean it’s the people in the place that make it a lot easier. There’s people who are willing to help Adam or people like him anywhere I think.”

Even though smaller communities were seen to aid community connections it was pointed out that it is not the setting so much as the people within it.

“We’ve got to look after our own community...In this day and age cutting down on this and that and everything else, if we don’t look after it nobody else is going to. And we’ve got to show them that we are looking after it. We’ve got to keep fighting for it.”

The lack of extended family, government funding, and human services programs were identified as possible causes for such high levels of trust and practical support within the rural communities.

Creative and non-traditional approaches were key to aiding connectedness

In each of the studies it was clear that there were key people rather than key services or programs who took active roles in the life of the person with a disability. These key people frequently presented themselves unexpectedly, presumably through personal recognition of perceived need or mutual regard. The elements of spontaneity and synchronicity of these engagements raise grave concerns about the focus of formal services and their capacity to aid connectedness.

“After Adam finished school they [school peers] recognised that he needed to still have contact with them.…They got together at school and talked about it and identified that Adam still needed to have that contact up there at school with them so they approached the principal and arranged for Adam to visit and have lunch with them one day a week at school. They rang us afterwards and I thought it was great. Those same group of kids identified that he was spending an awful lot of time on the telephone and they sat down and worked out a roster so that he would ring different ones on a different night.”

Four of the six participants relied on paid supports for some aspect of their life. The individualised nature of the funding arrangements allowed people to utilise the support in the way that was most helpful to them. We heard examples of where individualised funding is being used creatively and effectively to assist people to connect and remain connected to their community.

Adam’s Moving Ahead Coordinator began by getting to know Adam and his family. A whole lot of ideas were thought of and discussed including Adam’s desire to learn how to play golf, his interest in art and computers and his need to learn more about budgeting. The Coordinator gathered a list of people in the town who were engaged in golf or art or finances and started contacting them to ask if they might help Adam out with their particular skill. Using personal contacts the Coordinator has introduced three people to Adam around their common area of interest and they continue to have an unpaid role in his life The Coordinator meets with Adam and his family regularly to discuss new ideas and new contacts to explore.

“It just sort of takes somebody to drop a name and it’s a phone call and then they can tell you another name and that sort of name leads on to names and that’s how it’s been.”

Interviews shared insights into what important qualities were needed to engender personalised support:

· Power and control that remains with the person and/or their family

· Continuity of relationships

· Responsiveness to the person

· Quality communication based upon mutuality and reciprocity, that fostered feelings of being liked and respected

· Positive attitude

Understanding the distinctions between paid and unpaid supports and negotiating the support role was significant and problematic for some of the focus participants.

“I ask a support person to come with me for something because I like them as a person and I forget that this is also their work.”

Focus group members who were support workers were able to identify strategies which maximised respectful interactions. These strategies were frequently spontaneous reactions to a particular situation, and based upon familiarity with the person, and a clear understanding by the worker of dignity and control issues. For example one of Cassie’s support workers has learnt to discern if Cassie is being understood by the person she is speaking to and therefore when it would be helpful for her to assist. In addition, she always asks Cassie’s permission to ensure it is clear who is speaking.

Participants also identified when paid supports can act as barriers to their engagement with others.

“Facilitated communication is a personal, intrusive thing…there’s a real conflict between privacy and facilitated communication.”

“…they just take control. They make me powerless, they really do. And I get so annoyed. And I’m frustrated because I can’t say anything. That’s when I get really hurt.”

Forming connections and relationships required perseverance, risk, and initiation

The perseverance demonstrated by focus participants and their families was considered both inspirational and essential by other interviewees.

“The positives could not have come if her family weren’t there with their constant support and not afraid to go off at a tangent to check out an idea or information on a person who in some way could help… If Felicity’s family took the first advice and didn’t keep asking and trying she would not be where she is today.”

Risk was recognised as an unavoidable part of forming connections and relationships. Participants spoke about the reality of rejection and the effect it had on their lives. Two female focus participants had undertaken a range of studies to enhance their employment prospects. Frequent barriers and refusals were experienced.

“I’ve done everything possible to be employed. I did wool classing when I was on the farm. But fair enough, I was a woman, so couldn’t get work in the shed. That I could accept. And then welfare, I went and did nursing. I did so many courses. I’d get the qualifications and then there was always an excuse.”

“You go out; but boy, do I constantly get rejected! …I keep involved in things.”

Issues around access frustrated some interviewees who felt that spontaneity and flexibility were compromised, and planning becomes a high priority.

“…the restriction of time and the framework in which you have to do things – like you have to plan because you have to know it’s accessible; whether transport’s available. You can’t just ring up and say let’s go to the movies. Remember that time at the movies when we got lost trying to find the accessible entry? Or going for a train ride. You can go all the way to Beenleigh but you can’t come back because only once in a while is any station accessible. All those sorts of things control anything you might plan to do. There’s a level of spontaneity that just isn’t possible in the same way....”

Five of the six participants initiated the majority of their own social contacts. Several participants spoke about the need to initiate interactions rather than waiting for the community to be welcoming.

“I feel the support that Felicity got from the community came from her in the first place, fitting into the community, and she showed that she was interested in our community….She took part in our community so naturally we took an interest in her.”

Family members, in particular, were very aware of the importance of community engagement at multiple levels and in ordinary ways. They identified that interconnectedness within personal networks was an important element in maintaining connections.

“I can love her and be there for her but I can’t give her the independence. I can’t give her the feeling of normal, everyday things that these people do by being here. …It’s just the whole thing of building her up.”

Despite the perceived importance of sustainability, people’s energies were typically applied to current situations and challenges, with little time available to consider how connections and relationships will be sustained over time. One participant spoke about just taking life one day at a time.

The dynamic nature of many relationships and connections means that our responses to supporting people within community have to be personalised, flexible and developed over time. They require perseverance in the face of rejection and other barriers, the ability to take risks and to learn from them, and taking advantage of opportunities to initiate and welcome engagement with others.

Deeply rooted historical values and assumptions about people with disability were challenged through valued community roles

Members of all the groups expressed consensus about the importance of focus participants having valued community roles. These included opportunities for employment, education and voluntary roles. Innovative strategies had been implemented, and unique roles developed to successfully meet both the individual and the communities’ needs.

“…all the local businesses have private mail boxes and every day they all send one of their employees up to collect their mail. It can take them anything up to an hour to get back. They would have a chat to Aunty Jan and Gran and get Gran’s mail and get that script rather than doing it in their lunch hour. I thought, well, this is something Adam could do. He likes talking to people and all the business houses that we knew had private mail boxes and then two weeks later we personally approached them, myself and the support worker, and convinced some of them to take Adam on as a contract mail deliverer. So each business had their own mailbag with a zipper in the top and a tag on it with the business logo that Adam could identify easily...The bags would be at the post office. The post office would then bag the mail for the separate businesses that he had to deliver to on that day and he would deliver it and then drop the bags back to the post office. As a flow-on from that Adam now has morning tea with one of the businesses one day a week and the post office actually did offer Adam some work.”

Whilst it was considered that busy-ness and the rapid pace of society imposed constraints upon people with disabilities achieving valued roles, busy-ness was also highly valued.

“The need to have busy days, productive days, and being part of something because he lost a huge part of his life by leaving school.”

“The job there has given Felicity a purpose and it’s also given her the freedom and independence to be back in the community.”

All studies mentioned a seemingly unconscious awareness of increased numbers of people with disabilities participating in daily community life. This acknowledgement however did not assume automatic progression to inclusion and/or connectedness. There was a sense that community attitudes had changed significantly particularly with younger generations. The contribution and positive impact inclusion of children with disability in regular classrooms was commented on by three of the study groups as having an influence.

“The community attitude now is not as negative as it used to be… It’s only the ignorance of people.”

“I find younger people a lot more accepting. If you ask them, they say oh yeah we had a deaf kid in our class… That makes a difference too I think.”

Family connections opened doors to community

Family member’s personal community connectedness significantly benefited their young adult son or daughter’s access to a range of community-based activities, such as sporting clubs, service groups, and council functions. Many of Cassie’s network who were interviewed had met Cassie through her mother at tennis, lawn bowls, Little Athletics or coffee club. Similarly, Adam’s parents held roles on various community committees and the local council, and were recognised by others at the interview as very active and respected citizens. It was clear that these families acted as catalysts for their son or daughter’s community engagement.

“A lot of it is about the fact that my wife and I are involved in the community in a lot of other things which I suppose makes him more visible. I mean he’s visible in his own right but we are actively involved in other things in the community so he has the opportunity of more involvement or participation or visual presence or something. It would be so easy to just stay at home, lock yourself up and try to do everything yourself or feel bad about it and that in itself would lock you away and you wouldn’t achieve. “

RECOMMENDATIONS

We need to build on the possibilities highlighted by the lives of the individuals we met through our study. We have learnt that the more people are part of ordinary life in ordinary ways, the more likely it is for opportunities to present themselves. It is vital that old outmoded services which are community breaking not community making are no longer established or maintained. We understand that this will mean a fundamental shift in the way all human services value and interact with people with disability and their families and define their role and responsibilities. It will also mean a different focus for spending money, exercising decision making and accountability measures.

All energies need to be directed at providing timely, flexible support that enables people to be connected to everyday life.

Recommendations:

1. Tap into the collective wisdom of adults with disabilities and their families who have lived experiences about growing grass roots personalised responses and services which enhance opportunities for inclusion in community life.

2. Develop a sound values based funding strategy so that new money into the sector does not increase or prop up outmoded services.

3. Support the development of new services and initiatives which keep decisions close to the people involved and recognise their vision of a secure desirable future life supported in personalised, flexible and creative ways.

4. Provide opportunities for people with disability, their families, workers and friends to share visions, practical ideas and determination around ways that communities can be more welcoming and supports and services can be become more personalised.

5. Ensure that people with a disability in Queensland are not institutionalised or at risk of institutionalisation or any other housing arrangements that would seek to segregate them from their community.

ACKNOWLEDGEMENTS

QPPD wish to acknowledge the valued contributions of the following community members to this research project:

- The Research Steering Committee: Celia Baker, Roz Cooper (Chair), Sandra Kalms (Executive Coordinator), Marie Knox, Greg Mackay, Moya Nicholls (Researcher), Melissa Ryan, Lynda Shevellar and Elaine Stephenson for giving so generously of their time, interest, and experience.

- The Participants who so enthusiastically and openly shared their experiences and perspective with the research team. Special thanks to key individuals within each of the studies who undertook organisational responsibilities, such as distributing invitations and locating a suitable venue.