The Housing Connection 31 Albert Avenue Chatswood NSW 2067
People with Disability Share their Experience of Life Transitions
THANKS FOR ASKING US! National Disability Services Accommodation and Social Participation Conference 2010 6th and 7th May, Gold Coast
Presented by: Anne Fletcher: Client Representative, Board Anne-Louise Hickey – Manager: Client Services Renée Koonin – General Manager
The Housing Connection 31 Albert Avenue Chatswood NSW 2067
Introduction Let’s start with some stories:
Betty and Bill were happily married, despite the fact that Bill was in a wheelchair and suffered a debilitating disease. When he died suddenly, we expected Betty to be devastated. In many ways she was, there was most certainly a grieving process with which she needed support and, although Bill died a number of years ago, she told us recently that she still missed him. But the morning after he died, she rang THC to ask: Who will be moving in to take his place? What was she telling us about the challenge of this transition? Belinda worked at a Disability Employment Service for 35 years! We had no idea how she would cope with retirement but she has embraced the opportunity to work part time in a transition to retirement and to fill her days with hobbies and – her favourite – travel.
Experiences such as these – and countless others which no doubt you have all experienced in your work – have challenged us to think about how to facilitate the most positive transitions in the lives of those we support. Questions that arise include:
What are some of the issues critical to facilitating positive transitions? For Betty it was ensuring adequate support, having a place in the community and for having a network of friends; for Belinda ensuring she had positive and engaging alternatives to work. Are people with an intellectual disability more or less able to cope with inevitable changes in their lives or is their capacity to adapt simply the same as the range of responses in the general population?
These are our stories…not all are happy. Many are just the same as others in the community. With people with disability there are many who have no choice and in removing choice and control (sometimes because families are simply at the end of their tether), we set them up for life with an experience of dispossession. Janine, for example feels tricked: When she moved out of home she was told she could return home if she wanted, but this was never an option. So she felt betrayed, distrust and rejection are a recurring theme in her support. This scars people in terms of changing in other situations. In different circumstances, such as Betty’s example, we may project onto people the ways in which we feel they ‘ought to respond’. So, how do we go about ensuring the best possible transitions in the lives of the people we support?
The Housing Connection The Housing Connection (which started out in 1981 as the Lower North Shore Disabled Persons Action Group) was formed as a result of social action of the part of a group of parents who had a vision for a different type of service for their adult children with disability (primarily intellectual and mental health) – one that was truly based on clearly articulated principles of social inclusion, community participation and informed choice. Our work was person centred, not program oriented, from the outset. We walk through life, and all its transitions, beside those we support. The Housing Connection is a community of interest, made up of those we support, the staff and Board and members of the community. The first policy manual was written in the first person, from the perspective of people with disability supported by the organisation. The genesis of THC was visionary and deeply grounded in the values of social justice. Pre-dating the Richmond Report in NSW and both the State and Federal Disability Standards, its inception foreshadowed the public policy shifts that have come about in the subsequent decades.
The Housing Connection 31 Albert Avenue Chatswood NSW 2067 Many of those supported by The Housing Connection have been with us since the early days; others have joined us following significant life changes. The people who can tell us most clearly about what works in assisting people with disability through life transitions are those who have experienced them. In keeping with our commitment to hear and respond to the voices of those we support, the research that forms the primary source of this paper is the work of a woman with complex support needs who serves as Client Representative on The Board of Management. Through a series of interviews with people in the service who have experienced significant life transitions – including moving from institutional living to a group home and into the community; the death of parents/caregivers and retirement – they identify the key factors that enable successful change and highlight the challenges they faced.
People with Disability as Researchers The importance of participatory research methodologies in which people with an intellectual disability are interviewed about outcomes and quality of life is now widely recognized. (Cambridge, P and Forrester-Jones, 2003; Butler, 2006). There is more limited research (Perry and Felce, 2004) on the opportunities and challenges presented from involving people with an intellectual disability in interviewing their peers about quality of life. There is a distinction between ‘participatory’ research in which people with an intellectual disability act as respondents and ‘emancipatory’ or ‘participatory action research’ in which people with an intellectual disability are actively involved throughout the entire research process including discussions on funding, research design, conducting the research and analysis of results. Clearly, conducting research is one aspect that can readily undertaken by people with an intellectual disability – at least with those who are verbal and have the cognitive capacity to respond. The evidence of Perry and Felce (2004) demonstrates that people with an intellectual disability can be trained and supported to be competent data collectors and hold positions of responsibility in the research process. In addition, this approach challenges the type of conference that is ‘about us, but without us’ and strives to make this a truly inclusive approach. (Frawly, Bigby and Forsyth, 2006). As Gary, a young man with an intellectual disability says: ‘People were always talking about me, rather than to me’ (Butler, 2006). We chose this research method in keeping with our commitment to social inclusion and facilitating valued roles for the people we support.
People with Disability Facing Life Transitions For most people, dealing with change is a challenge. For people with cognitive impairments – often coupled with significant mental health problems – these difficulties may be magnified. Predictable life change may occur at a later stage than with people who do not have a disability (e.g. leaving home); some people may not gain legal independence, it may be harder to achieve an independent social life and employment options are severely reduced (Barron, Violet and Hassiotis). Imagine if you could not understand why a change was occurring, what the envisaged change looks like or what the consequences might be. Think about how you might feel if you lived in a fragile world which you held together by constructing structure and regular patters – and then this pattern is altered. How would you cope with change if you were weighed down with depression or if the thought of anything new filled you with an overwhelming sense of panic? Alternatively, how might it be if your
The Housing Connection 31 Albert Avenue Chatswood NSW 2067 emotional world was viewed very differently with attachments having very different meanings from those that we generally understand?
People with Disability - Defining Transitions In the disability literature, transition frequently refers to the transition from school into adulthood and all the attendant decisions this requires – further education, work, independent living. In the psychological and counselling literature, transition is defined more broadly to encompass a ‘shortterm life change characterized by a sharp discontinuity to the past’ (Brammer, L). Examples include job changes, disabling accidents, marriage, birth, divorce, death, serious illness, victimization, death, moving home and travel. These transitions can be positive such as an extended holiday or negative such as a traumatic event such as death of a loved one. These experiences are usually felt as a loss and can thrust the person into mourning. A transition may be voluntary or involuntary; timely (such as voluntarily moving out of the parental home) or experienced as ‘out of time’ such as an early death. Changes can be viewed in a number of ways:
1. Change as a journey (Bridges). This image encourages people to see their transitions as meaningful events in their lives and an opportunity for learning and growth. 2. Change as a social interaction (Schlossberg). In this model, change is seen as an interaction between the event and the person and is characterized in terms of its type, context and impact. The transition is then examined with respect to: a. The way the person experiences the event b. The nature of the transition itself c. The coping resources present at the time of the transition d. The personal characteristics of the individual and their environment such as social supports. These variables are studied to assess the balance of the current and possible strengths of and challenges to the individual. They are linked to the characteristics of the individual (self-identity, age, maturity, level of intellectual capacity). Work with the individual would require an assessment of the variables and person’s strengths and limitations and determine what resources are required to enable to person to cope satisfactorily 3. Change as a series of predictable, overlapping stages. In this model, transition is viewed as a process of fairly predictable stages that overlap and may recycle earlier stages. (Brammer, 1991); like a story-book pages are turned (Life story books, Books Beyond Words). They are adaptations of the work of Elizabeth Kübler Ross in relation to death and have been applied to loss and grief in general. These stages include: a. Confusion and emotional discomfort as well as shock if the loss is unexpected and severe. b. Sadness and despair which may alternate with relief and positive feelings. c. Mood stabilization, unless the loss is severe and defences – such as rationalization, denial and fantasy for example – are used. The person’s usual coping skills and network may be tapped. The length of this feeling of depression may vary depending on the person’s perception of the severity of the loss, coping resources, and cultural attitudes. A period of healing is encouraged. One goal is to let go of the past person, thing, job etc. and take hold of a new object or relationship. Over time these
The Housing Connection 31 Albert Avenue Chatswood NSW 2067 resources enable the person to regain self-confidence and self-esteem until they can look to the future with optimism and hope.
How do the people we support view their life transitions? Research findings My name is Anne and I have been supported by The Housing Connection for nineteen years. I am one of two client reps – elected at the Annual General Meeting – on the Board of The Housing Connection. Each month I phone a number of clients and ask them how they are going and then report to the Board meeting. I also make sure the Board knows about all the social and community activities (which I attend) that we are involved in. So, people supported by THC know me pretty well and it was easy for me to call them for this research as they are used to me chatting to them and asking questions. Before the interviews started, we sent them a form asking permission for them to be interviewed for this paper. Then we worked out what we wanted to know and what questions to ask. I interviewed 14 people and this is what I found:
Age The people I interviewed were aged from 19 – 63 years old. Six are in their forties and five are over fifty.
Gender I interviewed four men and ten women.
Length of time at The Housing Connection: Those I interviewed have been with The Housing Connection from 1 year to 20 years with nine for ten years or more.
Schooling Of course, they all went to school. Most of them went to a number of schools and changed from mainstream schooling to special classes in mainstream schools to special schools. They found these changes difficult and most of the people did not like school because they were teased. Even though most of them went to school a long time ago, they remembered it because they were so unhappy there and could not wait to get out. The people I interviewed left school between the ages of 14 and 17.
Facing changes Like other people in the community, those I interviewed have gone through many changes. The have:
Spent time in respite
The Housing Connection 31 Albert Avenue Chatswood NSW 2067
Moved out of the family home Moved house Made friends Been sick or had family members who have been sick. Some of them have had to deal with serious illness and death – including the death of mothers, fathers, a husband, sister and other relatives. Two lost family members in a car crash. Two of the people in the group have retired.
How did they cope with these changes?
Coping with change The most important thing that helped people cope with change was good support – both from families (especially their mothers) and especially the support from The Housing Connection. Also, it made a big difference if they had a say in what was happening in their lives. Other things that helped are:
Being independent and having things to do in the community. Having friends. There were a group of us who used to go to the same respite support when we still lived at home and we made friends there. It helps that we are supported by the same service as for some of us this means that not everyone was a stranger. It also means that we have a community into which new clients can be welcomed. Family support
Things that would have helped even more are:
More support at the right time A flat mate Getting work
What made it harder was:
When staff come and go, that is difficult – especially agency staff who they do not know Not having enough money to go out Not having a say in what they do in their lives and in any changes Not enough support – one client lived in the country with almost no support until he moved to Sydney Not being able to find a job Illness or accidents which meant they could not get out and about. Coping on their own when family died Being bullied and teased.
The most important thing that people feel makes a difference is support when it is needed and good contacts with family and friends and in the community. Dick said: It helps when people just take time to listen to him! I think it is really important that you ask people with disabilities what we need and that you listen to us. Also other people with a disability should have a chance to speak at conferences like this. Thank you for the opportunity.
The Housing Connection 31 Albert Avenue Chatswood NSW 2067
People with Disability - The Effect of Badly Managed Transitions Given that for people with an intellectual disability, the level of stress can be much greater unless the significant people around them manage the inevitable changes in life in a careful, measured and positive way. In many cases, people feel they have had very little choice and control in their life. A badly managed transition may lead to or entrench a sense of injustice, victimhood, helplessness, powerlessness, self-recrimination, aggression, anger, rage and resentment. A poorly executed transition plan may also give rise to the feeling they have lost control of their lives, the values and structure that once provided a stable sense of self has been lost or eroded. Their old life has been altered and a new one not yet established – potentially resulting in a limbo with no skills to navigate the transition.
People with Disability - Factors Affecting Satisfactory Resolution of a Transition In the psychological literature, coping is seen as a form of problem solving. Some of the factors that affect the time required for satisfactory resolution of a transition include:
The attitude the individual has to the event. . If change is seen as a normal part of living, rather than a curse or bad luck, this assists in coping. Those who perceive themselves as ‘in charge of their lives’ are resilient copers, as are those who are keen to resolve a challenge and see themselves as powerful actors in managing the change. The meaning of the transition to the person – how important is it and to what extent does it affect their identity and lifestyle? The degree to which the individual has a direct and active role in the change process (Agran and Wehmeyer, 2000). Whether the change is desired and seen as positive or not. Bramston and Cummins (1998) found that a positive event can be defined as a reduction in uncertainty and/or an increase in the perception of control. Other issues affecting the person’s life at the time. (Bramston and Cummins. 1988) found that while a transition such as moving into community accommodation may not be stressful in itself, and in fact is seen as a positive event which lowers stress at the time, other issues in their life may re-emerge and contribute to perceived increases in stress. The extent to which the person is aware and expresses feelings about the transition. Previous experience and learning Counselling where appropriate and in circumstances where anxiety is high. Personal coping skills e.g. experience of dealing with challenges successfully. Availability of and building and using support networks
People with Disability - Coping Strategies In our experience, and supported by Anne’s research, there are a range of coping strategies that make a difference in the lives of those we support:
The Housing Connection 31 Albert Avenue Chatswood NSW 2067
To facilitate a positive attitude, the attitude of key people in the life of the person with a disability is central. Therefore modeling constructive problem solving and adaptation to changed circumstances can assist the person with a disability. Valuing the role of the family and other important people in the lives of people with disability. As service providers, we also need to understand that we are impacting on an existing support process and therefore need to understand the critical role of the family and value all they have done…even if it feels restrictive, families have done the best they can and need to feel validated in their role. In addition, as they age, the capacity of family members and significant others to be an active participants in the lives of the person with disability may diminish. E.g. they may not be able to drive. We therefore need to be proactive in keeping these relationships alive. (Bigby, 2008). Building positive networks: Physical presence in the community does not equate with social inclusion (Bigby 2008). Formal: It is absolutely critical to have continuity of staff support and therefore workforce retention is an essential part of ensuring quality support and resilience in times of change. Lack of continuity breeds insecurity and can both establish new and maintain existing patterns of insecurity. Strong informal networks providing emotional support, direct practical support, financial assistance and management of relationships are crucial. Functions such as advocacy and monitoring the quality of service require a long-term commitment and are non-uniform, idiosyncratic and not easily replicated by formal services (Bigby, 2008). In Bigby’s study, the average number of informal contacts (people who lived outside their household and who were not paid) and who they say at least once every twelve months was 1.92! Without good networks, people with disability suffer the fact of being ‘Known well by no one’ (Bigby 2008).
The isolation so many people with disability experience, often without family support, is one of the key factors inhibiting their capacity to deal with change effectively .The Housing Connection’s community development model is critical in forging ties within our local community – with shopkeepers, sports clubs, churches and friends – so that this safety net is there for clients. This is even more important for those with no family or as families age. Cognitive restructuring and reframing – so that an event is viewed as positive. (e.g. Debbie’s move to her new home, the positive role of staff and the excitement e.g. around a housewarming party.) Very often people will take cues from those they respect – therefore if we are positive this enables people we support to feel more confident and positive. Enabling choice – as far as possible, people need to be in control of decisions that affect them. Facilitate opportunities for the expression of feelings and ensure the person, whether or not they are verbal, has the means to let us know what they feel about an event.
The widespread neglect of the emotional lives of people with intellectual disabilities has led to widely held beliefs that they do not experience grief, that they always live in the present and do not recognize or comprehend loss. Paradoxically, it has been thought that their grief is so great that they should be protected from the harsh reality of severe loss and death. These ideas have been widely refuted and in fact grieving may be prolonged. (Dowling). When losing a parent who is also a caregiver, the person with a disability is potentially losing
The Housing Connection 31 Albert Avenue Chatswood NSW 2067 far more – the person who attends to their needs, understands their communication, who spends much of their time with them and truly values them.
At the same time, we need to avoid projection – not putting our own interpretation on events. For example, Bessie lived with her mother for over fifty years and was dependent on her for almost everything. She never went on holiday without Mum, never had her own bank account. Though this changed significantly when she came to THC, much of our work focused on dealing with her mother’s control. Bessie was a devoted daughter and when her Mum went first into a nursing home and subsequently died, we wondered how Bessie would cope. The answer was wonderfully – she did grieve but she was also liberated and her lifestyle now is one she could only have dreamed of while her mother was alive! Managing stress responses and stress-inducing events. This involves both counseling, providing training in managing feelings (coping strategies) and where possible avoiding unnecessary life changes. In situations where it is possible to plan, the development and implementation of a good transition plan is critical – with capacity to respond flexibly. Give the time needed to contemplate, prepare and deal with relapses.
When change cannot be anticipated such as a sudden death of a loved one, inclusion, information, reassurance, validation of what the person is feeling and empathy and all important tools as well as factual, plain language to explain what is happening. (See Richard West, a young man who was not told his father was dying of cancer). One of the people we support, Justin, was forbidden by his family to attend his father’s funeral. As a result, he was unable to understand what had happened or obtain closure. He wanted to ring his Dad in heaven. Only when he was able to attend a funeral of another acquaintance was he able to have any understanding of what had happened. For those who cannot communicate effectively verbally, augmentative communication tools are critical in empowering choice and decision making. (Cameron and Murphy, 2002; Books Beyond Words Publications).
From our experience, the reactions of people with intellectual disabilities to change are as diverse as the responses of those in the general community. We will give the final word to a young man with an intellectual disability: Gary says: ‘I have always believed in myself. I know I can do things.’ (Butler). The least we can do – as family members, service providers, policy makers, researchers and academics – is to ask the people directly and to honour that knowing!
Thanks to Julie Bannerman for research support.
References Agran, Michael and Wehmeyer, Michael L., 2000, Promoting Transition Goals and Self-Determination Through Student Self-Directed Learning: The Self-Determined Learning Model of Instruction, Education and Training in Mental Retardation and Developmental Disabilities, 35,4, 351 – 364.
The Housing Connection 31 Albert Avenue Chatswood NSW 2067 Barron, Diana Andrea, Violet, Jo and Hassiotis, Angela, Transitions for Children with Intellectual Disabilities, http://www.intellectualdisability.info/life-stages/transition-for-children-withintellectual-disabilities, Accessed, 12th April 2010. Bigby, Christine, 2008, Known well by no-one- Trends in the informal social networks of middle-aged and older people with an intellectual disability five years after moving to the community, 33,2, 148 – 157. Books Beyond Words Publications, http://www.rcpsych.au.uk/bbw, Accessed 19th April 2010. Brammer, Laurence M, 1992, Coping with Life Transitions, Eric Digest, Bramston, Paul and Cummins, Robert A.; 1998) Stress and the move into community accommodation, Journal of Intellectual and Developmental Disabilities, 23, 4. 295 – 308. Butler, Gary, 2006, My experience of transition from being a Teenager to becoming an Adult, www.http://www.intellectualdisability.info/life-stages/gary-butlers-experience-of-transition, accessed 12th April 2010. Cambridge, Paul and Forrester-Jones, Rachel, 2003, Using individualised communication for interviewing people with intellectual disability: a case study of user-centred research, Journal of Intellectual and Developmental Disability, 28, 5 – 23. Cameron, Lois and Murphy, Joan, 2002, Enabling young people with a learning difficulty to make choices at a time of transition, British Journal of Learning Difficulties, 30, 3, 105 -112. Dowling, Sandra, Bereavement in the Lives of People with Intellectual Disabilities, http://www.intellectualdisability.info/life-stages/bereavement-in-the-lives-of-people-withintellectual-disabilities, Accessed 12th April 2010. Frawley, Patsie; Bigby, Christine and Forsyth, Heather; 2006, Why are conferences ‘Sometimes about us, without us’? Journal of Intellectual Disability, 31, 4, 249 – 251. O’Brien, Patricia; Theseng Avril; Tuck, Bryan and Capie, Angus 2001, Perceptions of change, advantage and quality of life for people with intellectual disability who left a long stay institution to live in the community, Journal of Intellectual and developmental Disability, 1, 67 – 82. Perry, Jonathan and Felce, David, 2004, Initial Findings on the involvement of people with an intellectual disability in interviewing their peers about quality of life, Journal of Intellectual and Developmental Disability, 27, 2, June, 164 – 171. West, Richard, When my Dad Died: 2003 A Relative’s perspective, http://www.intellectualdisability.info/life-stages/when-my-dad-died-a-relatives-perspective, Accessed 12th April 2010. Paper first given to a talk to the National Network for the Palliative Care of People with Learning Disabilities (NNPCPLD)
